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edited by 

David A. Ames 

Colin B. Giacey 



illustrated by Carol Gieger 



"GOOD GENES?": EMERGING VALUES 
FOR SCIENCE, RELIGION AND SOCIETY 
(A Study Guide for the Church) 



A Project/Thesis Submitted to the 
Episcopal Divinity School in Partial 
Fulfillment of the Requirements 
of the Degree Doctor of Ministry 



By: 

David A . Ames 
Colin B. Gracey 



f. JAsi^<>^ > ^Jrt/uu^^- hti^iL , ■w e * 7?<f r fyfi fs*^ 

John E. Skinner W. Hiyden McCallum MnH. Snow 




Dedicated to: 

Professor Charles Holt 

1936 to 1982' 
Biologist at M.I.T. 
Biotechnology Study Group Member 



"I was excited by the diversity in our 
approaches and background. It will be 
a significant and worthwhile challenge 
to find a meeting of the minds on these 
issues." Ned Holt. 



ACKNOWLEDGMENTS 
A great number of people have contributed to the 
formation and development of this book. We as editors are 
grateful to our colleagues and friends who have helped in 
a variety of ways: compiling data; listening to reports; 
submitting material; suggesting case studies; participating 
in conferences; writing evaluations and letters; observing 
group process; advising; testing completed work; reviewing 
for scientific and medical accuracy; reading drafts; being 
patient with our concerns about content, style and effective- 
ness with lay study groups. 

Although we cannot mention everyone by name, there are 
some who must be thanked: our Biotechnology Study Group ?vbly 
convened by Scott Paradise; Dr. Joel M. Rappeport for his 
consultation; the Episcopal Divinity School, its dean Harvey 
Guthrie, our Doctor of Ministry Colloquium, Hayden McCallum 
and John Snow for their supervision, and the Continuing 

Education Program; the Episcopal Diocese of Massachusetts 
and Bishop John B. Coburn; participants in the Professionals 
Conference; the Executive Council of the Episcopal Church for 
its grant; the testing of case studies at Christ Church, 
Cambridge and the leadership of Freda Alexander and the Rev. 
Margaret B. Gunness; and a second test run at Christ Church, 
Andover, led by Dr. Alan Pratt and the Rev. James Diamond. 

Finally, a special thank you to our wives, Susan Gracey 
and Carol Landau for their listening and helpful comments 



111 



as we met together at times in Boston, in Providence and 
even in Provincetown on Cape Cod. The art work by Carol 
Greger speaks for itself; the final responsibility for 
the content of this Study Guide is ours. 

Colin B. Gracey, 
David A. Ames, 



editors 



June 29, 1983 



CREDITS 

"The Dawn of a Scientific Era" is reprinted from Splicing 
Life: A Report on the Socia l and Ethical Issues of Genetic 
Engineering with Human Beings , November, 1982, pp. 25-^-9. 
available from the Superintendent of Documents, U.S. Govern- 
ment Printing Off ice , Washington, D.C. 20^02, for $5-00, 
Stock Number 0^0-000-00^64-5. 

The Case, "The Threat of Hemophilia" and the discussion 
articles by Sissela Bok and by Marc Lappe are reprinted with 
permission from The Hastings Center Report , April, 197^- 

"Mass Genetic Screenings The Issues" and "Screening for 
Huntington's Choreas A Special Case"', by Jan Wojcik, are 
from Muted Consent: A Case Book in Modern Medical Ethics , 
(c) 1978 by Purdue Research Foundation, West Lafayette, 
Indiana 47907, U.S.A. 

The Cases "Hydrocephalus", "Collapsed Lungs", "More than 
Hydrocephalus" and "Urinary-Tract Blockage" are selected 
from an article, "Saving Babies Before Birth" by Robin 
Marantz Henig, published by The New York Times Magazine , 
February 28, 1982, Reprinted by permission of the Julian 
Bach Literary Agency, Inc. Copyright (c) 1982, by Robin 
Marantz Henig. 

"The Fetus as Patient: Ethical Issues", by John C. Fletcher, 
and "Management of the Fetus with a Correctable Congenital 
Defect", by Michael R. Harrison, MD ; Mitchell S. Gilbus, MD ; 
and Roy A. Filly, MD are from the Journal of the American 
Medical Association , Vol. 246, No. 7, August l4, 1981, 
pp. 772-777, Copyright 1981 , American Medical Association. 
Used with permission. 

iv 



The Case, "New Conception, New Issues" is adapted from 
"New Conception Methods, New Issues", by Joan Beck. 
Copyrighted, Chicago Tribune. Used with permission. 

The Cases, "The Del Zio Saga", "Dilemma in Danville", and 
"Embryo Banking: An Egg for Another" are adapted from the 
following articles in The Hastings Center Report and used 
with permissions 

a) "A Report from the Del Zio Trial", by Tabitha M. 
Powledge, October, 1978, p.l5f. 

b) "Dilemma in Danville", by John A. Robertson, 
October, 1981, pp. 5-8. 

c) "The Moral Uses of Spare Embryos", by Clifford 
Grobstein, June, 1982, pp. 5 - 6. 

"Mass Screening for Neural Tube Defects" , by Gina Bari 
Kolata, is. reprinted with permission from The Hastings 
Center Report , December, 1980. 

"A Child of Artificial Insemination Wonders", Copyright (c) 
1982, Ivor and Sally Ogle Davis. Reprinted by permission 
of the Los Angeles Times Syndicate. 

"Artificial Insemination: Beyond the Best Interests of the 
Donor", by George J. Annas, is reprinted with permission 
from The Hastings Center Report , August, 1979- 



TABLE OF CONTENTS 

Foreword ix 

Notes on Organizing Group Study and Discussion xi 

Part I 

A. Introduction 1 

B. Theological Overview and Context for Ethical Decision- 6 
Making 

C. The Dawn of a Scientific Era 18 

1. The Topic and the Participants — Session 1 66 

a. Prayer, social event (meal, coffee and cookies, etc.) 

b. Introductions and expectations of participants 

c. "Who did what?" 

d. An overview of the sessions 

e. Individual and group projects 

f. Transitions 

g. Closing prayer 

2. Cells on the Move — Session 2 79 

a. Prayer, social event, Bible reading discussion 

b. Perception exercise 

c. Mass screening 

d. Four cases: 

(1) PKU: Second Generation Effects 89 

(2) Severe Immunodeficiency 9 3 

(3) The Threat of Hemophilia 95 

(4) Bone Marrow Transplant 98 

vi 



e. Background readings 100 

f. Transition 

3. Surgery Before Birth — Session 3 119 

a. Prayer, social event, Bible reading discussion 

b. Articles in the news; questions, comments 

c. A hypothetical situation 

d. Four cases: 

(1) Hydrocephalus 12 6 

(2) Collapsed Lungs 128 

(3) More than Hydrocephalus 131 

(4) Urinary-Tract Blockage 133 

e. Background readings 135 

f. Transition 

4. Fertility Problems and Birth Defects: Opportunities 

and Dilemmas — Session 4 158 

a. Prayer, social event, Bible reading discussion 

b. Comments, questions, news items 

c. Reminder about next session projects 

d. Four cases: 

(1) New Conception, New Issues 164 

(2) The Del Zio Saga 166 

(3) The Birth of Missy B 172 

(4) Dilemma in Danville 175 

e. Background readings -^79 

f. Transition 

5. The Business of Biology — Session 5 ^97 

a. Prayer, social event, Bible reading discussion 

vii 



b. Project reports on sperm and ova banks and research 
companies in biotechnology 

c. Four cases: 

(1) The Nobel Sperm Bank 20 3 

(2) Embryo Banking: An Egg for Another 20 5 

(3) Fetal Vulnerability in the Workplace 207 

(4) Hormones and Gold Medals 209 

d. Background readings 212 

e. Transition 

6. Theological Viewpoints — Session 6 230 

a. Prayer, social event, Bible reading discussion 

b. A perspective on life and knowledge 235 

c. Theology and culture 242 

d. Discussion questions 

e. Evaluation and concluding celebration 

Part II 

1. Key Events in Recent History 253 

2. Biotechnology Study Group and Profile Statements 2 71 

3. Professionals Conference and Test Sites 301 

4. Glossary of Terms 304 

5. Bibliography 315 



Vlll 



FOREWORD 
One of the more significant issues affecting the future 
of humanity is the promise of new developments in biology. 
The discoveries made today and the decisions about their use 
will be an important base for determining the direction and 
well-being of the human community during the next generation. 
It is our conviction that the Church must be a participant 
with other institutions in society as people of competence 
and goodwill in science, technology, religion and public 
policy struggle to determine what will enhance goodness and 
justice for all. If the Church defaults on its responsibility 
to be an active participant in these issues, it will be 
represented by reactive statements which will be simplistic 
in their outlook. We will return rapidly to a negative 
posture of science versus religion, both in unresolvable 
conflict. 

A Biotechnology Study Group was convened in 1982, for 
the purpose of bringing together people who were concerned 
enough to develop a study guide for church members and others 
to inform them about the issues and to aid in the process of 
responsible and informed decision-making. David Ames and 
Colin Gracey, as members of the Study Group, proposed to edit 
this curriculum and to have it serve as their project in 
partial fulfillment of requirements for their Doctor of Ministry 
degrees at the Episcopal Divinity School in Cambridge, Massachusetts, 

It is our pleasure to commend this book to you as reader 
and to your friends as you gather in discussion/study groups. 

ix 



May it enhance and enliven your interest in this vital field 
and help you maintain a sense of realistic hope for the 
future. 

Charles A. Cesaretti, 

Public Issues Officer 
The Episcopal Church 

John B. Coburn, 

Bishop, The Episcopal Diocese 
of Massachusetts 



x 



NOTES ON ORGANIZING GROUP STUDY AND DISCUSSION 

"Good Genes?": Emerging Values for Science , Religion and 
Society is a study guide and resource book for ethical delib- 
eration and discussion about issues raised by recent develop- 
ments in molecular biology, genetics and technology as these 
effect humankind. Everyone who makes choices or decisions 
which affect their own lives and the lives of others, and this 
includes all of us, has experience in ethics and therefore 
should be invited to approach this curriculum as equals, as 
learners from each other, as resources for one another, as 
"members one of another." 

The subject calls for a group discussion structure and 
participation. The sessions are informal, guided by a leader 
for the entire series or by rotating leadership with a convenor 
and a planning group selected for each session. The subject 
matter raises new and important questions for all of us. In 
some instances these involve genuine personal and social di- 
lemmas that await resolution and consensus. Some of the mater- 
ial is intense and demanding so an attempt has been made to 
provide for a good-spirited and open-ended discussion and de- 
bate. Participants may have to work to channel levels of their 
emotional involvement since some of the case studies may bring 
to mind past personal history or knowledge of similar exper- 
iences of family members or friends r 

The suggested length of each session is two hours. These 
might be held after a Sunday morning church service in the 

xi 



traditional adult education forum, or as a weekly evening 
series. The study guide may be used as a weekend conference 
for the parish, or a cluster of parishes, or an ecumenical or 
community gathering. Or, it may be adapted to a week-long 
conference. However used, it is important to begin and end 
sessions at an agreed-upon time. 

This is not a series to be dropped into and out of, de- 
spite its relative informality. Participants should be com- 
mitted to the full series. They will be asked to think, to 
contribute to the discussions and to work. If your church or 
group is accustomed to having people "sign up" and commit them- 
selves to an intensive short-term series, this study guide is 
well suited for that model. 

"Good Genes?"; Emerging Values for Science, Religion and 
Society: A Study Guide for the Church provides six full ses- 
sion plans, each accompanied by substantial resource material. 
The content of the sessions is suited for use in follow-up 
meetings, if desired; and if the response to an announcement 
of the series is greater than anticipated, two or more groups 
of ten to fifteen members each might be formed. Groups could 
choose to do some session material in separate settings and 
then come together to share insights, learnings and concerns. 
A suggested outline for the first session is provided and may 
be used with a fairly sizeable group. The purpose and goals 
for sessions 2 through 6 are presented but a suggested outline 
for these sessions is not included. Flexibility and the need 

for careful planning by group leaders is important for making 

xii 



the sessions effective in your local situation. You might 
find it helpful to invite a biology teacher from a nearby 
high school or college, a physician, research scientist, or 
social policy person, or a member of an institutional review 
board (IRB) from a hospital or research center to be a re- 
source participant in the series. 

Make the series known to your congregation and to the 
community well in advance of the sessions. Have copies of the 
study guide book available in a central place for people to 
examine before registering. A meeting prior to the beginning 
of the series and for late registrants may be helpful. Books 
could be distributed at this time. Group leaders/facilitators 
might be introduced and everyone should be encouraged to read 
the Foreword and Introduction prior to the first session. The 
Introduction provides useful background information and dis- 
cusses a rationale for involving church study groups in work- 
ing through the issues. It is important for establishing a 
common ground and understanding. 

The following suggestions present a procedure for stimu- 
lating interest; they should be adapted to your particular 
setting and needs. 

SUGGESTIONS FOR GETTING STARTED 

1. Announce the series in the parish newsletter or bulletin. 

A printed notice on church and community bulletin boards, 

and an announcement in the local newspaper will help. Use 

current articles, magazine cover, or drawing to highlight 

xiii 



your announcement. 

2. Provide sign-up opportunities. Perhaps a registration 
form to be filled in, torn out and dropped off or mailed 
to the church. 

3. Gather necessary resource materials to help organizers and 
leaders/facilitators fulfill their responsibilities. Pen- 
cils, notepaper, newsprint should be available. A resource 
book on adult education might also help. Equipping God's 
People; Basic Concepts for Adult Education (Evans and 
Hayes, The Seabury Press, 1979) is one such book. 

4. Purchase enough books for each participant to have a per- 
sonal copy. You might need a few extra for late registra- 
tions. 

5. The convenor of the first session, and the leaders will 
benefit from reading all of the study guide before the 
first session. Good preparation will assure a good series. 

6. Plan a pre-series meeting to: 

-- introduce the series to any newly interested people 

-- distribute books to each person who has signed up 

-- suggest that everyone read the Foreword and Introduction 

— introduce the leader/facilitator for the first session 

-- announce time, date, and place of meeting 

-- reinforce commitment to the entire series 



xiv 



PART I 



A. INTRODUCTION 

-- A thirty-six year old pregnant woman is told by her 
doctor that a test performed on her shows that everything is 
proceeding normally. Her developing fetus is fine. Would she 
and her husband like to know now, four months before the ex- 
pected time of birth, whether their baby will be a girl or a 
boy? The test provided the doctor with this information. 

-- Newspapers every week carry articles about some new 
development in biology. For example, a front page headline 
reads, "Scientist discovers key toward fixing genetic defects." 

-- Magazines and journals carry articles for public con- 
sumption on new developments and the latest technology in 
modern biology and genetics. Many of these magazines and 
journals were not in existence ten years ago. Books on this 
subject are being published in greater and greater numbers and 
raise the issues which are truly significant for our lives. 

The force of these illustrations is that today we are hav- 
ing to make decisions that were unheard of ten years ago. These 
decisions concern both individual health and well-being and so- 
cial policy about the direction of life itself and the use of 
our collective resources. 

Since 1971, with the publication of a report titled "Sci- 
ence and the Quality of Life," much attention has been given 
by the World Council of Churches to ethical dilemmas and prob- 
lem-producing developments in modern biology as they affect 



human beings. This was followed, in 1973, by an ecumenical 
consultation on Genetics and the Quality of Life held in 
Zurich. Discussion was continued in Nairobi in 1975; and the 
subject was a major agenda item at the "Faith, Science and 
the Future" conference in 1979, in Cambridge, Massachusetts. 
"Ethical Issues in the Biological Manipulation of Life" was 
the title of the report from this conference. Then, in 1981, 
a working group meeting in Vogelenzang, Netherlands, produced 
another report, "Ethical and Social Issues in Genetic Engin- 
eering and the Ownership of Life Forms." 

It is clear from these studies, as well as from other 
meetings and publications, that religious concerns and scien- 
tific interests are profoundly interwoven in the complex is- 
sues raised by the advances in biological research and tech- 
nology. Some of these include genetic diagnosis, abortion, 
fetal surgery, the question of when human life begins, new un- 
derstandings of emerging life, and the broader issues of ecol- 
ogy and non-renewable resources. Among the questions raised 
are these: What is the common responsibility of scientists, 
theologians and ethicists, and the public, to address problems 
created by new discoveries of knowledge and resulting technolo- 
gies? How is the church related to this enterprise? What are 
the assumptions of our religious and scientific endeavors? How 
do human beings understand the power they have to change them- 
selves? How do they intend to order or to structure the changes 
they will make? Is there any quest in science that should not 
be pursued? Are there any procedures to be avoided or banned? 

2 



These questions, while favored by theologians and ethi- 
cists as important for discussion, often are perceived as 
suspect by scientists. Science is concerned with the pursuit 
of knowledge. Basic research is the profession of science and 
these questions pose a threat to that enterprise. On the other 
hand, the issue is not research per se , but the kind of research 
as well as the uses and purposes of the research results as they 
are expressed through technology. It involves the religious or 
theological concern about what we believe about life. It is also 
the concern of ethics: how ought decisions to be made about the 
application of new knowledge as it affects the human community. 
It is also about meaning and what constitutes the good. 

The study guide which follows addresses the nature of 
ethical deliberations in this new situation. It assumes a 
community within the Judeo-Christian tradition, and the theo- 
logical views expressed come out of that perspective. How do we 
decide what to do when there are competing values both claiming 
to serve human goodness and well-being? The series begins with 
an overview of theology and a context for making ethical deci- 
sions. The emphasis is on Christian theology and ethics because 
that is the background and experience of the editors. It is our 
understanding that the themes of creativity and redemptive 
action belong together. To be agents of redemption is to parti- 
cipate creatively in the dialogue of the kind presented in this 
study guide. The problem of alienation from the created order 
is part of the human condition. Whether fortunately or unfortu- 
nately, the Bible does not provide answers for the kinds of 



issues presented in this series. There is tension, uncertainty, 
ambiguity which must be acknowledged. As we have worked in 
putting this study guide together, and as we have used it with 
groups during its formative period, we have witnessed the polar- 
ity between those wanting clear biblical or Christian answers 
and those, in our culture, who dismiss any consideration of 
these issues by the proponents of the Judeo-Christian tradition. 
The editors intend this volume for use primarily by Christian 
study groups, especially within the Episcopal Church, but recog- 
nize that its use will be enriched by participation of representa- 
tives from other traditions and the wider community. 

A second section in this introductory chapter is an expo- 
sure to the basic science which is the subject of current research, 
i.e., gene-splicing, and all that is implied by that term. This 
science section is important for understanding the direction in 
which we are headed. The case studies in the following chapters 
reflect the current state of the art in biotechnology and the 
ethical decisions that now must be made. When new technologies 
come along for making use of the findings of current scientific 
research, new cases will surface for discussion and decisions. 
The method of doing ethics will be the same. 

The task for the users of this study guide is one of dis- 
covery. It is the discovery of the issues, of the biblical 
heritage we share, of the direction we are charting in the pre- 
sent. Along the way the process of this discovery may be both 
painful and exciting, both frustrating and enjoyable, and cer- 
tainly never boring. The leaders who use this study guide are 



encouraged to refer to the introductory and transition sec- 
tions for each chapter prior to organizing discussion groups. 
Our hope is that the discussions and debates of the issues in 
this study guide will be useful for the decisions and public 
policies yet to come. 



B. THEOLOGICAL OVERVIEW AND A CONTEXT FOR ETHICAL DECISION- 
MAKING 

Theology presents an understanding (logos) of God (theos) . 
Christian theologies seek to express the content of faith in 
Jesus Christ in a clear and coherent manner based on partici- 
pation in and reflection upon the faith that is central to the 
life of the church. The theological aspect of Christian com- 
munity is expressed whenever the faith has been subjected to 
thought. The thoughtful presentation of the content of the 
Christian faith is usually a methodical and critical statement 
of the truth of the Christian message and the interpretation 
of this truth for the current generation. Thus, theologies 
move within the life of the community of faith -- back and 
forth — between the claim of the eternal truth of the church's 
foundation and the temporal situation in which that truth is 
received. 

The Christian claim is that Jesus Christ expresses the 
divine presence within and in relation to all creation. Theol- 
ogies attempt to state the ramifications of this faith for 
Christian living and to interpret what John Macquarrie calls a 
"holy worldliness" characteristic of Christianity. Such in- 
terpretations vary not so much concerning the centrality of 
faith, hope and love in response to Jesus Christ as in the way 
they emphasize and draw upon factors that are operative within 
the church. These factors include: particular experience, the 
place of scripture and tradition, the manner of worship, cul- 



tural ethos, the manner of reasoning, the language and artis- 
tic expression of the times, preoccupations of people, and the 
knowledge by which people inform their lives. 

Changes in these elements of expression do not alter the 
central commitment of theology to the meaning, purpose, and 
promise of life as revealed in Jesus Christ and known in the 
present reality of the church. This primary concern involves 
the theologian as a participant in faith to the love which 
saves and which is both personal and corporate. It is from 
the perspective of this special claim and realm of knowing that 
theologies reflect the centrality of faith for Christian en- 
gagement in the world and with all creation. 

The social, intellectual, and scientific movements of our 
age are no threat to theology or to the church's witness to 
the God of history known to humankind in the "Word made flesh." 
However, what is important today is the understanding and 
capacity to see the relation of God to present-day developments 
and the possible uses of our new knowledge either for good and 
for the enhancement of human well-being, or for evil and the 
detriment of humankind and the environment. 

Even more important than perceiving God at work in crea- 
tion, including new advances in science and technology, is our 
task of continuing to be faithful to the Word of God in history 
and in human experience. Today, that means, among other things, 
wrestling with the importance of biology, coming to terms with 
the current edge of developing knowledge, that is, being per- 
sons of our time. As we change, so does our theology, our 



understanding of God. 

Two quotations concerning the meaning of faith may be 
useful in reflecting upon how one might understand faith to- 
day. The first quotation is from the theologian, Paul Tillich: 

"Faith is certain in so far as it is an experience of the 
holy. But faith is uncertain in so far as the infinite to which 
it is related is received by a finite being. This element of 
uncertainty in faith cannot be removed, it must be accepted. 
And the element in faith which accepts this is courage. Faith 
includes an element of immediate awareness which gives cer- 
tainty and an element of uncertainty. To accept this is cour- 
age. In the courageous standing of uncertainty, faith shows 
most visibly its dynamic character." 

The second quotation is from Philip A. Potter, General 
Secretary, World Council of Churches: 

"Faith is first of all a call to repentance, metanoia, 
the radical change of our thinking and outlook, of our style 
of life and, indeed, of our whole being towards God in Christ 
and towards our fellow human beings. It is an act of sharing 
in the death of Christ — the crucifixion of our self-regarding 
existence, and in the resurrection of Christ — the affirmation 
of the impossible becoming real, of life being wrested from 
death. Faith in the crucified and risen Lord is, therefore, 
a radical break with a static understanding of our existence 

into dynamic living and daring God's future. To have faith 

2 

is to hope and to act in hope through love." 

What does "called to be faithful" imply? The big tendency 

8 



in an age of uncertainty is to seek out simple and clear ans- 
wers to life's problems. It is a most difficult task to live 
with ambiguity, to live without a clear sense of direction, to 
live in fear and awe before the threat and promise of life, to 
have hope when everything could go awry. Life's problems are, 
however, complex and there are no easy answers. It is a mis- 
take to think that science in general, or biology in particular, 
will one day be able to answer all our human questions about 
the origin of life or any questions about its meaning and pur- 
pose. To believe that the meaning of life can be solved by 
science is contrary to the understanding of faith as Philip 
Potter and Paul Tillich have suggested. To believe in this 
way is also contrary to the Biblical teaching about faith. The 
Word of God is the word of faith: i.e., God who liberates people 
from bondage and captivity and delivers them to the place of 
freedom and promise ; God who becomes human flesh in Jesus, 
"the way, the truth, and the life." There is no definitive or 
absolute answer to the questions of life's origins and its mean- 
ing. To have such an answer is to come to a deadend. Besides, 
as soon as one answer seems to come into focus, other questions 
emerge. So it is with life. And so it is with faith. Being 
faithful is always movement toward something, moving toward 
unity or a holistic view of humanity, of nature, of science, of 
the universe. When a person understands this "uncertainty in 
faith" and has the "courage" to accept it, then one is ready to 
"act in hope." How one acts is faith at work; it is that whole 
area of decision-making. 



Will our new discoveries in science change human assump- 
tions about the nature of God? "Biotechnology changes the 
way we perceive the human situation. It alters our under- 
standing of what a human being is, what our destiny is, what 
our potential is -- and who God is. Certain scientific meta- 
physical assumptions slink into our minds unperceived under 
the cloaks of scientific discoveries -- and then once there 
they take the place of traditional religious ideas. One of 
the most interesting of these is the idea of human identity. 
How can we sing . . . * it is He who has made us and not we 
ourselves . . . ' if we are deliberately fashioning human gen- 
etic material according to our own fancy? Once we take this 

giant step, is it possible to produce a new species of being 

3 
from humanity which is not human?" 

The biologist, Charles Birch, in an address titled "Nature, 
Humanity and God in Ecological Perspective," provides a helpful 
response to this concern: 

"We think we know something about the beginnings of the 
universe and the beginnings of life. But our dominant scien- 
tific technological world-view and a good deal of the Christian 
theology that accompanies it provides no framework within which 

we can find comprehensible answers to questions of point and 

purpose. 

What then might Yahweh say to the modern questioner? 

Who is this obscuring my designs with his mechanistic 

models of the universe so that there is room neither 

for purpose, mind nor consciousness? 

Brace yourself like a fighter, for now it is my turn to ask 

10 



questions and yours to inform me. 
Where were you at the big bang? 

How is it that out of a universe of pure hydrogen you have 
come into existence? 

Did life begin when the first cell came into existence or do 
elements of life exist in the foundations of the universe? 
How can you be so sure that all is contrivance? How can mind 
grow from no mind? How can life grow from the non-living? 
Do people grow from blind mechanism? Is not a universe which 
grows human beings as much a human or humanizing universe as 
a tree which grows apples is an apple tree? 

Or do you think that figs grow on thistles and grapes on thorn: 
Does not the life of Jesus tell you something about the life o: 
the universe? Was he not there in some sense from the founda- 
tions of it all? 

You who live in rich countries can you not see how every in- 
crease in your standard of living reduces that of someone in a 
poor country now as well as threatening the survival of future 
generations? Who is madly Christian enough amongst you to cut 
his standard of living by a third for the sake of the poor? 
Do you think that the world and all that is in it is simply fo] 
your use? Has it no other value? 

Are plants that grow and flower in the desert, where no man is 
of no value? 

Because there are accidents and chance in the world why do you 
think there is therefore no room for purpose? Can you not have 
both? And when you have analysed life down to its molecular 

11 



bui]ding blocks in DNA , why do you think you have discovered 
the secret of life when you have not yet discovered the source 
of love and all feeling? - 

And why do you want to make of me either an all-powerful en- 
gineer or an impotent non-entity when I am neither? 

'To all of which we can only reply as Job replied: 
I have been holding forth on matters I cannot understand on 
marvels beyond me and my knowledge. 

I knew you then only by hearsay; but now, having seen you with 
my own eyes, 

I retract all I have said, and in dust and ashes I repent. 

Job 4 2 
That is an encounter of the ultimate kind. Intelligence is 
almost useless to those who possess nothing else. Confession 

of incompetence, according to the book of Job, is the beginn- 

4 

ing of wisdom. " 

Having read this far, you might want to stop here and re- 
flect upon what you have read. Does it apply to you? Why or 
why not? You might consider writing a few notes or comments, 
or a question or two for discussion with other members of your 
study group. 

How do we go about deciding what to do with respect to 
others? How is the important question for ethics. Ethics is 
concerned with humian values, i.e., everything that one con- 
siders as important. These values are either moral values or 
non-moral values. Examples of non-moral values include know- 
ledge, beauty, health. Moral values are concerned with ques- 

12 



tions of the good or goods. Past experiences, traditions, 
present insights and expectations for the future are basic to 
decision-making. A person's sense of duty, the results anti- 
cipated, and the particular situation in which choices must 
be made are all important for implementing moral values. These 
values are often considered within the framework of ethical 
theories. Three principal theories of ethics, for example, 
are: (1) Duty — theories which "rely on a priori moral values 
such as justice, autonomy, truthfulness, and beneficence"; (2) 
Results -- theories which "define moral value in terms of non- 
moral effects such as pleasure or happiness"; (3) Situation — 
theories which rely "on fundamental moral values, even while 

taking account of anticipated differences among individuals" 

5 
and circumstances. These theories provide the conceptual 

frames within which actions may be shaped and decisions made. 
Part of the process of making choices is the understanding of 
all the alternatives. No alternative should be rejected be- 
fore examining it and testing it in terms of risk and benefit, 
cost and promise. Then, given the alternatives as they have 
been identified, what does it mean to be a person of faith 
within each alternative? Ethics is a complex discipline in 
which good choices compete for attention. This study guide 
does not advocate one theory over others; it is important to 
understand that there are several perspectives and theories 
within ethics. The following diagram illustrates the context 
in which ethical decisions are made and the sources of insight 
which inform the decisions we make. 

13 



Sources of Ethical Insight 



Retrospective 
Insight 
(Memory) 



the 



decision-making 



context 



*Prespective 
Insight 
(Hope, Prediction 
Anticipation) 



B 
Introspective 
Insight 
(Awareness, Love) 
Briefly stated, the past (A above) , the present (B above) , 
and the future (C above) are sources of insight, the ingredi- 
ents which enter the arena of ethical decisions. Memory, his- 
tory, precedent, tradition and experience are all part of the 
sources of the past — retrospective insight. Awareness, love, 
intuition, subjective interest, conscience combine as sources 
of the present -- introspective insight. Hope, prediction, an- 
ticipation, results, outcomes, consequences are the words of 
sources of the future — prespective insight. The following 
illustrations provide examples of each insight: 



Kenneth Vaux contributes this term as "a neologism" for what 
is "at once hope-engendering and frightening." The word is 
used to describe the lure, prescience or foreknowledge, or the 
sensing of the future. 



14 



An "example of retrospective value insight (A) comes in 
the area of human experimentation. The Nuremberg statutes, 
which inform so much of the current discussion on medical 
ethics, also have power in their historicity. They say as it 
were, 'This you have learned — never let it happen again! ' 
One cannot comprehend the caution and concern that pervades 
situations of clinical experimentation today apart from the 
influence of the Nuremberg history. In nations closer to the 
history — Germany and the Soviet Union, for example — the 
consciousness is heightened. Witness the reluctance to heart 
transplantation in those countries. America and the rest of 
the world pay great respect in clinical experimentation to the 
Nuremberg principles of thorough animal testing, informed con- 
sent, and precedent of patient's interest over the scientific 
value. " 

An example of the introspective dimension of ethical in- 

(i 

sight (B) is illustrated by the issue of abortion. At the 
levels of personal needs and public policy, we feel the terri- 
ble tension between common sense and conscience. Common sense 
prompts an empathetic response to women in need of safe, legal 
and economically feasible abortion. "Conscientious concern 
for the sanctity of fetal life and social affirmation of the 
value of life prompt a contrary action." There is both power 
and limitation, impetus and restraint, in this introspective 
source of insight. 

An example of prespective insight (C) which involves re- 
sponsibility for the future is a letter written in 1974 by a 

15 



group of eleven scientists headed by Paul Berg. The letter 
noted new advances in recombinant DNA research and the fact 
that "scientists are now planning to use this technology to 
create recombinant DNA's from a variety of other viral, ani- 
mal, and bacterial sources. Although such experiments are 
likely to facilitate the solution of important theoretical and 
practical biological problems, they would also result in the 

creation of novel types of infectious DNA elements whose bio- 

9 
logical properties cannot be completely predicted in advance." 

The letter went on to call for "volunteer deferring" of certain 
types of experiments; for not "undertaking lightly" experiments 
creating a DNA replication system whose "biological properties 
cannot be predicted with certainty" ; for establishing a nat- 
ional advisory committee to oversee experimental programs, to 
develop procedures and to devise guidelines for investigators 
working with potentially hazardous DNA molecules; and to con- 
vene an international meeting for reviewing scientific progress 
and discussing ways to deal with potential biohazards. Dur- 
ing the six years following publication of this letter the 
feared hazards of recombinant DNA research did not develop and 
the guidelines which were established came to be perceived as 
too restrictive and inhibitive of free scientific inquiry. De- 
bates have focused around issues of national versus local con- 
trols for research and whether scientists have a moral obliga- 
tion to speak out concerning potential effects of new scientific 
developments. Prespective insight is about the tension between 
what can be done in science and technology and the possible con- 

16 



sequences of those actions. 

This study guide focuses on new knowledge that is emerg- 
ing in the field of genetics and the applications of bio- 
technology. It gives examples of how such knowledge changes 
the situation in which human decisions are made. It identifies 
the issues which challenge us to a fresh evaluation and clari- 
fication of the values we uphold in our engagement in and with 
life and world as it is. The following section provides some 
basic scientific background which may prove helpful for further 
consideration of the topics in this curriculum. 

FOOTNOTES ; 

1. Tillich, Paul, Dynamics of Faith , Harper & Brothers, N.Y., 
1957, p. 16. 

2. Faith and Science in an Unjust World , Vol. 1: Plenary Pre- 
sentations, Edited by Roger L. Shinn, Fortress Press, 
Philadelphia, 1980, pp. 28, 29. 

3. In a written comment to the editors from Scott Paradise. 

4. "Nature, Humanity and God in Ecological Perspective," by 
Charles Birch, in Faith and Science in an Unjust World , 
Vol. 1, pp. 66, 67. 

5. "Should Ethics Be Taught in a Science Course?" by Mary B. 
Mahowald and Anthony P. Mahowald, in The Hastings Center 
Report , Vol. 12, No. 4, August, 1982, p. 18. For clarity, 

•we have used the terms Duty, Results, Situation in place 
of "Deontological, " "Utilitarian," "Contractarian. " 

6. Vaux, Kenneth, Biomedical Ethics : Morality for the New 
Medicine , Harper & Row, New York, 1974, p. 37. 

7. Ibid., p. 40. 

8. Ibid., p. 43. 

9. Science , 26 July 1974, p. 303. 
10. Ibid. 

17 



C. THE DAWN OF A NEW SCIENTIFIC ERA 

Many of the questions raised about genetic engineering 
cannot be explored without some understanding of the technical 
aspects of contemporary genetics and cell biology. Lack of 
information - or misinformation - not only provokes unwar- 
ranted fears but may even mean that legitimate and important 
questions remain unasked. Yet most Americans have had little 
formal training in biology, let alone in the specialized 
fields, such as micro- and molecular biology, that are in- 
volved in genetic engineering. Although a brief synopsis is 
plainly no substitute for a detailed education, some back- 
ground may be helpful for nonspecialist readers. This 
chapter of the Report is intended, then, to explain a few 
essential concepts, to describe several of the most important 
techniques of genetic engineering, and to show how rapidly 
this field is moving toward direct human application. 

Discovering Life's Mysteries 
What is remarkable about the sciences of gene splicing 
is not that it seems strange to laypeople - for all science 
is arcane to those who do not specialize in its study - but 
rather how unfamiliar it would be for the geneticists of even 
one generation ago. The existence of discrete inherited 
factors (later called genes) was postulated in 1865 by 
Grego Mendel, a Moravian abbot who studied the patterns of 

18 



inheritance in pea plants; his important work relied, 

however, on inferences about genes, not knowledge about 

their structure or functioning. Mendel's work lay forgotten 

until the beginning of this century, when the techniques of 

classical genetics were developed and physicians began to 

apply genetic knowledge in diagnosing conditions and in 

advising people about the conditions known to follow 

Mendelian patterns. Fifty years passed before Francis Crick 

and James Watson proposed the double helix as the structure 

for deoxyribonucleic acid (DNA) , which is sometimes called 

the "master molecule of life" since almost all living things - 

including plants, animals, and bacteria - possess it. And 

the basic technique of gene splicing - a method for cutting 

1 
and reuniting DNA - is itself only a decade old. 

Equally remarkable is that many new discoveries point 

to further unanswered - and perhaps even unanticipated - 

questions. The humbling reality of human ignorance is as 

relevant for those in industry and government who sponsor 

and regulate scientific research as it is for those who 

engage in that research. Any attempt to unravel more of 

life's mysteries can lead in unexpected directions, with 

unknown risks and benefits. The choices made about proceeding 

in one direction rather than another - or whether to proceed 

at all - are not simply matters of original scientific 

insight or intuition nor even of taking the "next logical 

scientific step." They also depend upon the judgment of 

individual scientists, laboratory directors, and public 

19 



and private sector sponsors, drawing on analogy and con- 
jecture, educated by experience, and reflecting personal 

2 
and institutional values. 



Cells and Genes ■ 

The human body is made up of billions of cells. Each 
cell has a particular function - cells in the gastronintestinal 
tract produce enzymes that digest food, bone cells provide 
structural support, and so forth. In spite of their markedly 
varied functions, most cells share the same structural organi- 
zation - they have a nucleus, where the genetic information 
is stored, and cytoplasm, where the specialized products of 
the cell are made (see Figure 1) . 

It has been thought that all cells in an organism 
normally contain exactly the same genetic information, with 
the exception of the germ cells (sperm and eggs) , which 
carry only half. This information is located on individual 
packets called chromosomes, which come in pairs, half derived 
from each parent. Every species of plant or animal has a 
characteristic number of chromosomes. Humans usually have 
23 pairs, or a total of 46; the germ cells have 2 3 chromo- 
somes, one from each pair, while the somatic cells (the 
rest of the cells in the body) contain a full set of chromo- 
somes. Recent studies have shown that the genetic information 

is rearranged in some cells; thus far, these findings are 

3 
limited to the antibody-producing cells. 

20 



Figure 1: : Cell Structure 



Ribosomes 

(Location of protein 

synthesis) 



Cytoplasm 



Chromosomes 
(Consists of DNA double 
helix) 




Nucleus 



21 



Each chromosome includes a long thread of DNA, wrapped 
up in proteins. DNA is made up of chemicals called nucleo- 
tides, consisting of one small sugar molecule, one phosphate 
group, and one of four nitrogenous bases, which can be 

thought of as the four letters in the genetic alphabet (A,G, 

4 
T, and C) . DNA consists of two strings of nucleotides 

lined up next to each other like two sides of a zipper - the 

phosphates and sugars forming the ribbons and the nitrogenous 

bases acting like the interlocking teeth. The two strands 

are twisted around each other in a spiral fashion, forming 

what Crick and Watson in 1953 labeled a double helix. Each 

nucleotide is matched with another, to form a pair. That 

is, the two sides of the zipper can fit together in only one 

way: A paired with T, and G with C. 

When a cell divides into two daughter (or progeny) 
cells - a process called replication - a complete and faithful 
copy of the genetic code stored on each chromosome is usually 
transmitted to each daughter cell. Each half of the zipper 
acts like a template for the creation of its zipper-mate by 
drawing to itself free nucleotides, which then line up accord- 
ing to the A-T and G-C pattern (see Figure 2) . 

Not all the DNA in chromosomes seems to have a function. 

The portions with the coded instructions to the cell to 

perform a particular function (usually to manufacture one 

particular protein) are called genes. Within the gene are 

the actual coding regions (called exons) , between which are 

22 



Figure 2: Replication of DNA 



Old 



Old 




Old New New Old 

When DNA replicates, the original strands unwind and serve as 
templates for the building of new complementary strands. The daughter 
molecules are exact copies of the parent, with each having one of the 
parent strands. 
Source: Office of Technology Assessment. 



23 



DNA sequences called introns . Genetic information is trans- 
ferred from the DNA in the nucleus to the cytoplasm by RNA 
(ribonucleic acid) , which is a copy of one strand of the DNA. 
During this transfer, the introns are spliced out of the RNA. 
The resulting RNA messengers pass through the cell's protein- 
synthesizing machinery (called ribosomes) , like a punched 
tape running through a computer to direct a machine's 
operation. 

Proteins - the hormones, enzymes, connecting material, 
and so forth that give cells and organisms their characteris- 
tics - are made up of amino acids. The information carried 
by the RNA determines how the amino acids combine to:~make 
specific proteins. There are 20 amino acids, each one 
determined by a specific combination of three of the nucleo- 
tide "letters" into a "codon." On average, each gene contains 
slightly more than 300 codons . 

Although all cells in an organism carry basically the 
same genetic material in their nuclei, the specialized nature 
of each cell derives from the fact that only a small portion 
of this genetic material (about 5-10%) is active in any cell. 
In the process of developing from a fertilized egg, each type 
of cell switches on certain genes and switches off all the 
others. When "liver genes" are active, for example, a cell 
behaves as a liver cell because the genes are directing the 
cytoplasm to make the products that allow the cell to perform 
a liver's functions, which would not be possible unless all 
the genes irrelevant to a liver cell, such as "muscle genes," 

24 



turned off. 



Accidents and Diseases 

Occasionally - perhaps because of an error that occurs 
for some unexplained reason when the cell replicates or 
because of an outside influence such as a virus or radiation - 
the specific sequence in a DNA molecule is altered by a 
change of one or more nucleotides. Such a change is called 
a mutation. If a mutation occurs in a gene that is active 
in that cell, the cell will produce a variant protein, as 
will its daughter cells since they will inherit the same 
mutation. If other cells of the same type continue to 
perform their functions properly, the existence of a small 
amount of variant protein will usually have no adverse effects 
on the individual. Some mutations, however, are very harmful; 
for example, a defective protein can be lethal, or a malignant 
tumor can result from a mutation that alters a gene in a 
single somatic cell. 

Mutations that occur in somatic cells only affect the 
progeny of that mutant cell, so that the effects of such 
mutations are restricted to the individual in whom they occur. 
In the germ cells, however, mutations result in the altered 
DNA being transmitted to all cells - somatic and germinal - 
of an offspring. Inherited mutations that result in 
deleterious effects are termed genetic diseases. Even 
though an inherited mutation is present in the DNA sequence 

25 



of all the body cells, it only affects the function of those 
specialized cells that manufacture the defective product. 
For example, a mutation in the gene for rhodopsin (a protein 
necessary for vision) may result in color blindness, but 
since the gene is only active in cells in the eye it has no 
other known effects on a color-blind individual. 



26 



The Technology of Gene Splicing 

Gene splicing techniques have been understood by 
scientists for only a decade. During that time, they have 
been used primarily in microorganisms. Though experiments 
with higher animals indicated the possibility of using gene 
splicing for human therapy and diagnosis, numerous hurdles 
had to be crossed before such steps could be taken. Recent 
research has cleared some of those hurdles, and work is 
under way that may conquer the rest much sooner than was 
thought possible even two years ago, when the Commission 
began this study. 

Recombinant DNA Techniques 
It was once thought that genetic material was very 
fixed in its location. Recent findings demonstrate that 
genetic recombination (the breaking and relinking of dif- 
ferent pieces of DNA) is more common between and within 
organisms - from viruses and bacteria to human beings - 
than scientists realized. In fact, genetic exchange is a 
mechanism that may, in evolutionary terms, account for the 

appearance of marked variations among individuals in a 

5 
given species. 

If DNA replication were the only mechanism for the 

transfer of genetic information, except for instances of 

mutation each bacterium would always produce an exact copy. 

27 



In fact, three general, mechanisms of genetic exchange occur 

6 
commonly in bacteria. The first, termed transduction, 

occurs when the genetic material of a bacteriophage (a virus 
that infects bacteria) enters a bacterium and replicates; 
during this process some of the host cell's DNA may be in- 
corporated into the virus, which carries this DNA along 
when it infects the next bacterium, into whose DNA the new 
material is sometimes then incorporated (see Figure 3) . 

In a second process, called conjugation, bacterial DNA 
tranf erred directly from one microorganism to another. Some 
bacteria possess plasmids, small loops of DNA separate from 
their own chromosome, that give the bacteria the ability 
to inject some of their DNA directly into another bacterium 
(see Figure 4) . And third, bacterial cells can also pick 
up bits of DNA from the surrounding environment; this is 
called transformation. 

These mechanisms - naturally occurring forms of gene 
splicing - permit the exchange of genetic material among 
bacteria, which can have marked effects on the bacteria's 
survival. The rapid spreading of resistance to antibiotics, 
such as the penicillin-resistance in gonorrhea bacteria and 
in Hemophilus influenzae (the most frequent cause of children's 
bacterial meningitis) , documents the occurrence of genetic 
transfers as well as their benefit, from a bacterial stand- 
point. 

The basic processes underlying genetic engineering are 

28 



Figure 3; Transduction :■ The' Transfer of Genetic 
Material in Bacteria by Means of Viruses 



Bacterial 
Empty chromosome 
Bacterium v j ra ] coa { fragments 




Virus 




New virus 
particles 



Stepl 



nTeTtio^^ 



Step 2 



Vira 
DNA 



Cell 
breakdown 




New 
bacterium 



In step 1 of viral transduction, the infecting virus injects its DNA into the 
cell. In step 2 when the new viral particles are formed, some of the 
bacterial chromosomal fragments, such as gene A, may be accidently 
incorporated into these progeny viruses instead of the viral DNA. In step 
3 when these particles infect a new cell, the genetic elements 
incorporated from the first bacterium can recombine with homologous 
segments in the second, thus exchanging gene A for gene a. 

Source: Office of Technology Assessment. 



29 



Figure 4: Conjugation: The Transfer of Genetic 
Material in Bacteria by Mating ■ 



Plasmid 



Plasmid 




Transfer 

during 

conjugation 




In conjugation, a plasmid inhabiting a bacterium can transfer the 
bacterial chromosome to a second cell where homologous segments of 
DNA can recombine, thus exchanging gene B from the first bacterium 
for gene b from the second. 

Source: Office of Technology Assessment. 



30 



thus "natural" and not revolutionary. Indeed, it was the 

discovery that these processes were occurring that suggested 

to scientists the great possibilities and basic methods of 

gene splicing. What is new, however, is the ability of 

scientists to control the processes. Before the advent of 

this technology, genetic exchanges were more or less random 

and occurred usually within the same species; now it is 

possible to hook together DNA from different species in a 

fashion designed by human beings. 

The key to human manipulation of DNA came with the 

7 
discovery, in the early 1970' s, of restriction enzymes. 

Each restriction enzyme, of which about 150 have so far 

been identified, makes it possible to cut DNA at the point 

where a particular nucleotide sequence occurs. The breaks, 

which are termed "nicks," occur in a staggered fashion on 

the two DNA strands rather than directly opposite each other. 

Once cut in this fashion, a DNA strand has "sticky ends"; 

the exposed ends are ready to "stick" to another fragment 

that has been cut by the same restriction enzyme (see Figure 5) 

Once the pieces are "annealed" and any remaining gaps are 

ligated, the "recombinant DNA" strand will be reproduced when 

the DNA replicates. 

Recombinant DNA studies have been performed primarily 

in laboratory strains of the bacterium Escherichia coli , 

which is normally present in the human intestine. This 

bacterium possesses only one small chromosome, but it may 

31 



Figure 5: Creation of "Sticky Ends" by a Restriction Enzyme 



Nick 



I 



-X-X-X-G A-A-T-T-C-X-X-X- 

• ••• •••• 

-X-X-X-C-T-T-A-A G-X-X-X- 



t 



Nick 



One restriction enzyme produced by E. co/i, named Eco RI, recognizes 
the DNA sequence -G-A-A-T-T-C- on one strand and -G-T-T-A-A-G- on 
the other. It does not cut clearly across the two strands, however, but 
between the G and A on both strands, leaving each with exposed bases 
that can stick to another DNA strand that has been cut in the same 
fashion and also has an exposed -A-A-T-T- sequence. 



32 



also contain several ring-shaped plasmids. Plasmids turn 
out to be useful vehicles (or vectors) by which a foreign 
gene can be introduced into the bacterium. A plasmid can 
be broken open with restriction enzymes, and DNA from another 
organism (for example, the gene for human insulin) can then 
be spliced into the plasmid (see Figure 6) . After being 
resealed into a circle, the hybrid plasmid can then be 
transferred back into the bacterium, which will carry out 
the instructions of the inserted DNA (in this case, to 
produce human insulin) as if it were the cell's own DNA. 
In addition, since plasmids contain genes for their own 
replication independent of bacterial DNA replication, many 
copies of the hybrid plasmid will be present in each E. coli 
cell. The end result is a culture of E. coli containing 
many copies of the original insulin gene and capable of pro- 
ducing large amounts of insulin. 

The process of isolating or selecting for a particular 
gene is commonly called cloning a gene. A clone is a group 
of all of whose members are identical. Theoretically, this 
technology allows any gene from any species to be cloned, 
but at least two major steps must be taken to make use of 
this technology. First, it is quite easy to break apart the 
DNA of higher organisms and insert fragments randomly into 
plasmids - a so-called shotgun experiment - but identifying 
the genes on these randomly cloned pieces or selecting only 
those recombinant molecules containing a specific gene is 

33 



Figure 6: Splicing Human Gene into Plasm id 



E. coli bacteria, taken 
from human intestine 



Pancreas 




Nucleus / 



Plasmid -£^C3) \^^S) 




• E. coli 

I chromosome 

/ 

I 

/ Plasmid removed 
from E. coli 



Plasmid cut opnn by 
restriction enzyme 
at a specific site 




Human cell 



Strand of DNA from human cell 



Human DNA cut 
into pieces 
\ J by restriction 
enzyme 




TVvo pieces spliced together 



Recombinant DNA 
(hybrid plasmid) 




Human insulin gene 



Hybrid plasmid 
inserted into E. coli cell 



Source President's Commission 



Bacteria with hybrid plasmid replicate, creating clone 
capable of producing insulin 



34 



much more difficult. Because scientists do not yet fully 

understand what controls gene regulation, inducing expression 

of the inserted genes has been a second major hurdle. Recently, 

scientists have been successful in getting a recombinant 

gene to function in multicell animals and, with the discovery 

of what are termed transposable elements, even in correcting 

8 
a defect in some fruit flies' genes. This development serves 

as a reminder that many technical barriers that loom large 

are rapidly overcome. Of course, new knowledge sometimes 

also reveals further, unanticipated technical difficulties 

to be overcome . 

Cell Fusion 

Cutting apart DNA chains is not the only way that 
scientists can transfer genetic material from one cell to 
another. Cell-fusion, which involves the breaking down of 
cell membranes and the merging of two different types of 
cells, can also be regarded as a form of genetic engineering 
although it does not involve direct manipulation of DNA 
segments. It is being vigorously explored by biomedical 
scientists who are attempting to map the specific location 
of human genes on chromosomes and to learn about cellular 
development and differentiation. These advances should 
ultimately lead to better understanding, diagnosis, and 
treatment of various diseases and cancers. 

For example, researchers can now produce what are 

35 



termed monoclonal antibodies. Antibodies are substances 
produced by the body to fight foreign substances, such as 
microbial "invaders." Unlike other methods of production, 
cell fusion techniques have provided especially pure anti- 
bodies against a particular invader (or "antigen") . They 
are called monoclonal because they are produced by a clone 
of cells descended from a single fabricated original. First, 
scientists stimulate a mouse to produce antibodies by injecting 
it with a protein. White blood cells containing an antibody 
aimed at fighting the "disease" (which is how the mouse's 
immune system regards the injected proteins) are then fused 
chemically with malignant cells through a process that 
involves dissolving and regenerating the cells' outer mem- 
branes. This combination - called a hybridoma - inherits 
the cancer cells' ability to proliferate rapidly and 
indefinitely and the blood cells' capacity to produce the 
antibody. Scientists can thus generate a huge clone of 
cells, which can provide a large amount of the desired anti- 
body. 

Cell fusion is not limited to the creation of hybri- 
domas. The 1980 Supreme Court decision that sanctioned the 
patenting of "new life forms" did not involve recombinant 
DNA techniques but rather the insertion into bacteria of 

four naturally occurring plasmids capable of degrading 

9 
four components of oil. The Court held the resulting 

microorganism was patentable because it was new (as bacteria 

36 



in nature did not incorporate all four of the plasmids at 
once) and useful (as the genetically engineered bacteria 
could break down oil spills more rapidly and efficiently) 



37 



Geneticall y Engi neered Medic al Products 

The ability to "engineer" new capabilities into micro- 
organisms has now been used to develop therapeutic and diag- 
nostic agents for human use. This is the first, and thus 
far the major, use of gene splicing in the medical sphere. 

Production of Drugs and Biologies 

Most living cells are protein factories, "manufacturing" 
products according to the "code" of those genes in the cells 
that are active. Through the use of gene splicing techniques, 
bacterial cells can be altered so that they will turn out 
the product encoded by a foreign gene that has been spliced 
into a plasmid in the bacteria. When such bacteria are 
then grown in large-scale fermentation broths, huge quan- 
tities of valuable medical products are expected to be 
harvested because bacteria multiply very rapidly - a single 
bacterium can produce more than a billion copies of itself 
in 15 hours. 

The list of medically useful products that may be 
obtained through gene splicing techniques is long; a few 
applications will serve to illustrate. The new technology 
has already led to the production of several useful human 
hormones, including human growth hormone to treat dwarfism. 
To date, many desirable medical products had to be isolated 
and purified biochemically from natural sources. For 

38 



example, the insulin consumed by diabetics in this country 

is isolated from the pancreata of over 80 million cows and 

pigs each year. Since the supply of pancreas glands is 

dependent on the demand for beef and pork, gene splicing 

offers a more stable supply of this essential hormone. Insulin 

produced with recombinant DNA methods has recently been 

10 
approved for sale in Great Britain and the United States. 

It is predicted that gene cloning of many human hormones 
will soon be accomplished. Other useful products made by 
the human body in small quantities are being worked on. 
For example, there is interest in producing urokinase, 
which dissolves blood clots and may be useful for treating 
thrombophlebitis, and anti-hemophilic factor, which is 
required for blood clotting and is needed to treat hemophilia. 

Interferon is another natural product that has attracted 
much interest for its apparent ability, discovered in 1957, 
to prevent a virus from proliferating after it invades a 
body. By the mid-1970s, laboratory evidence suggested that 
interferon might curtail the spread of certain cancers. 
Clinical tests and therapeutic application proceeded slowly, 
however, because supplies of interferon were very limited 
and extremely costly. Most interferon was extracted from 
cells of donor blood samples in minute quantities, usually 
laced with impurities. The cost of treating one cancer 
patient is between $20,000 and $30,000. Therefore, great 
enthusiasm greeted the prospect of using recombinant DNA 

39 



techniques to create interferon ( a process that also 

revealed that interferon is not a single substance but a 

family of related ones, each of which may be effective against 

11 
certain problems) . 

Interferon produced through gene splicing is now being 
tested in clinical trials. Although research to date on 
interferon obtained by the traditional methods suggests 
that its potential as the proclaimed "wonder drug" was greatly 
overstated, the use of gene splicing to produce pure samples 
in larger quantities offers an opportunity to clarify the 
many questions that have arisen in the limited existing 
clinical tests and to resolve some of the issues regarding 
the use of human interferon in cancer treatment. 

Another area of widespread applicability is in the 

production of useful vaccines. Presently, a weakened strain 

of a virus must be grown in tissue culture, a tedious chore, 

before people can be inoculated. There is always a risk 

that the virus used for inoculation may change into a more 

virulent strain and actually produce the disease it was 

meant to protect against. Genetic engineering would allow 

large-scale production of pure viral components (that is, 

the protein "coat" of a virus, which is how the body 

recognizes the virus as a foreign invader and sends out its 

antibodies to attack it). Such components, being only part 

of the virus, should be much safer while still conferring 

immunity. Within the past several years, researchers at 

40 



MIT reported the cloning of the gene for the protein coat 

of polio virus and an international team announed it had 

used recombinant DNA technology to produce the surface 

12 
antigen associated with the hepatitis B virus. Researchers 

are also exploring the development of vaccines for certain 

cancers associated with particular viruses, such as the 

Epstein-Barr virus and hepatitis B virus, using the anti- 

13 
genicity of the outer coat of the viruses. 



Cancer Diagnosis and Therapy ■ 
A major line of research in oncology today employs 
genetic engineering technology - in the form of cell fusion - 
to harness the potential power of monoclonal antibodies in 
the fight against cancer. Because the human body synthesizes 
such a huge variety of antibodies, the hope is that anti- 
bodies can be produced that are highly targeted for particu- 
lar tumors and especially for the few cells that remain 
when a tumor is surgically excised or irradiated. Anti- 
bodies tagged with markers (such as trace amounts of radio- 
active chemicals) can also act like probes, permitting 
better diagnosis of the location and size of cancers. 

Thus far, physicians have reported on only a few 
dozen cancer patients treated with monoclonal antibodies. 
The notable results of one of these early trials were 
announced in March 1982: a man with a rare malignancy that 
had defied previous treatment received a specially designed 

41 



antibody and within weeks showed dramatic improvement, 

including the disappearance or diminution of the tumors 

14 
that had proliferated throughout his body. Although proof 

of effectiveness and an understanding of side effects must 
await years of clinical testing, the theory behind the 
technique is attractive: target a particular cell for 
attack by an antibody, or by a chemical poison attached to 
the antibody, rather than rely on current methods that in- 
volve radiation and chemicals that can have devastating 
effects on the body f s normal cells while they attempt to 
destroy all the cancer cells. 

Genetic engineering is also being used by biomedical 
scientists who are trying to understand and control the 
recently identified "oncogenes" that apparently direct the 
wild proliferation of cells that creates a tumore . Sometimes 
the genetic error involved appears to be inherited; other 
times it apparently results from damage during a person's 
lifetime from chemicals, radiation, or a virus. Gene splicing 
may permit the genetic error to be identified early and even 
to be treated, although such procedures are not imminent. 



42 



Genetic Screening and Diagnosis' • 

One spin-off of recombinant DNA technology exploits 

the specificity of restriction enzymes to help diagnose 

the existence of or the carrier status for a wide range of 

genetic disorders that until now have not been readily 

15 
diagnosable. The technique holds particular promise for 

prenatal tests and for diagnosis of late-onset disorders 
such as Huntington's disease. Recombinant DNA techniques 
allow the DNA of a gene itself to be assessed, unlike 
previous techniques that necessitate waiting for the gene's 
product (that is, an identified protein) to be manufactured. 

"Restriction enzyme sites" are the specific sequences 
in the DNA at which one of the 150 known restriction enzymes 
recognizes and cuts the DNA molecule. Restriction enzymes 
can provide the basis for a useful assay for a particular 
gene in two ways: (1) if the molecular variation in the DNA 
of the gene is known and coincides with the cutting site 
for a particular restriction enzyme on the gene in question, 
or (2) if the restriction enzyme site lies on a variant DNA 
"marker" gene adjacent to the gene of interest, with which 
it is linked. Both techniques are based upon the fact that 
specific restriction enzymes cut the DNA into fragments 
of a characteristic length. If the sequence of the nucleo- 
tides is"abnormal" at a point that a restriction enzyme, 
would cut, the enzyme will not cut there but at the next 
enzyme site, thereby producing a DNA fragment of unusual 

43 



16 
length. 

Mutations in the nucleotide sequence can have harmful, 
neutral, or beneficial consequences. Those that are dele- 
terious put an organism at a disadvantage for survival and 
reproduction; hence they usually appear at very low fre- 
quencies in a population. On the other hand, some mutations 
persist with some frequency in a species. Occasionally, 
these variant forms of DNA - which are called polymorphisms - 
occur in the portions of the genes that actually code for 
proteins, apparently because they provide the organism with 
some survival advantage. Polymorphisms are more frequent 
in the introns or in the "spacer DNA" (those segments of 
the chromosomes that lie between the genes) because they 
do not code for proteins and their precise DNA sequences 
are thus not crucial for normal functioning. 

Some genes that code for variant hemoglobins are 
relatively frequent, such as the gene that causes sickle-cell 
disease. It is an example of a mutation that, in the hetero- 
zygous form, provides a selective advantage. In regions 
where malaria was prevalent, people who had one gene for 
sickle hemoglobin (and one for normal hemoglobin) were less 
likely to die from malaria. In 1978, geneticists 1 under- 
standing of the mutational site of the sickle-cell variant 
led to a direct demonstration of the primary gene mutation 

responsible for sickle-cell disease by using a restriction 

17 
enzyme that cuts DNA at that site. This procedure allowed 

the detection of the sickle mutation by an examination of 

44 



the length of the fragments produced. Thus, sickle-cell 
anemia - which previously could be diagnosed prenatally 
only by obtaining a sample of fetal blood (a process that 
is more difficult and riskier than ordinary amniocentesis) - 
is diagnosable in fetal cells using recombinant DNA tech- 
nology, although the procedure is not yet in wide clinical 
use. 

At least in the foreseeable future, scientists do not 
believe that most genetic diseases will be diagnosable by 
finding a direct correspondence between a known mutation 
in the gene and a restriction site since the nature of the 
DNA mutation in most genetic diseases remains unknown. But 
two new alternative diagnostic means are now being used for 
a growing list of genetic conditions. The first, which 
depends on restriction fragment length polymorphisms, can 
be used even when the genetic mutation is not known. By 
using restriction enzymes to reveal variations in spacer 
DNA and in introns, scientists within a few years will have 
created a map of genetic landmarks on all chromosomes so 

that studies of genetic diseases can be undertaken to locate 

18 
the genes that cause these diseases. Thus, one or another 

DNA variant will be linked with each genetic disease. When 
such a "linkage" between an abnormal gene and a DNA poly- 
morphism is used, the closer the restriction enzyme cutting 
site is to the gene, the more likely it is that they will 
be inherited together. 

To apply this technique to screening, it is necessary 

45 



to do studies of the genes in a family and develop the 
linkage patterns between the "marker" DNA and the gene of 
clinical interest. The finding of a specific DNA pattern 
in an offspring is only significant for diagnostic purposes 
when a parent or sibling who has the genetic condition in 
question has also been typed for the linked marker. Often 
both parents, and sometimes other relatives, have to be 
studied to interpret the meaning of the DNA pattern in the 
child. 

A second new method, termed oligonucleotide hybridiza- 
tion, can be used when the mutation in the gene is known but 

19 
does not coincide with a restriction enzyme site. An 

assay can be performed with relatively short synthetic DNA 

probes that will show whether the gene or the mutant is 

present. The initial research has been done in a pulmonary 

disorder, but the first general applications are likely to 

be in the prenatal diagnosis of the various beta-thalassemias . 

Although the diagnostic uses of gene splicing have 

engendered less controversy than the theraputic uses (and, 

hence, receive less attention in this Report) , this area of 

health care is one that recombinant DNA technology is likely 

to affect most in the immediate future. In effect, these 

developments will magnify the ethical considerations addressed 

20 
in the Commission's report on genetic screening and counseling. 

Genetic engineering techniques will permit the identification 

of a much wider range of genetic traits and conditions in 

utero; thus, they may greatly broaden the demand for, and 

46 



even the objective of, prenatal diagnosis. 

Difficult social and ethical issues will also be posed 
by the greatly enhanced ability of genetic screening to 
identify people with a susceptibility to diseases, some of 
which are treatable (such as colon cancer in patients with 
hereditary polyposis, or hemochromatosis, a disease involving 
a buildup of iron in the blood) and some of which are not 
(such as Huntington's disease) . Genetic screening will 
probably be much more widely used not only in personal medical 
care and counseling but also in public health programs, in- 
surance exams, and occupational or pre-employment settings 
as more is learned about the association between particular 
genotypes and disease susceptibility. Screening may permit 
individuals to obtain preventive medical care early or to 

identify those environments and behaviors that they ought to 

21 
be especially careful to avoid. 



47 



Curing Genetic Disorders 

In the immediate future, the most important applications 
of gene splicing techniques for human health will probably 
be in the creation of products - hormones, enzymes, vaccines, 
and so forth - for human consumption and in the development 
of genetic screening. But in the long run, direct use of 
the technique in humans can be expected to have an impact 
that is much more significant in terms of changing people's 
health and developmental status, and more novel and far- 
reaching in conceptual and psychological terms. During 1982, 
the prospect of direct application of gene splicing to cure 
human genetic diseases moved forward by large steps, although 
formidable hurdles remain. 

The simplest form of human gene splicing would be 

directed at single gene mutations, which are now known to 

22 
cause more than 2000 human disorders. Such a defect in 

just one gene - although each human cell has as many as 

100,000 genes - can have tragic and even fatal consequences. 

Existing treatments of genetic diseases are all palliative 

rather than curative - that is, they are merely aimed at 

modifying the consequences of a defective gene. In contrast, 

gene splicing technology offers the possibility of correcting 

the defects themselves and thus curing at least some of 

these diseases. The effects of gene splicing might be limited 

to the somatic cells of the individual being treated or might, 

48 



intentionally or otherwise, alter the germ cells, thereby 
creating a change in the genes that would be passed on to 
future generations. 

Somatic Cells 

The basic method proposed for using gene splicing on 
human beings is termed "gene therapy." This is defined as 
the introduction of a normal functioning gene into a cell in 
which its defective counterpart is active. If the mutant 
gene is not removed but merely supplemented, the cells may 
continue to produce the defective product alongside the 
normal product generated by the newly added gene. 

Even further in the future is a theoretical possibility, 
sometimes referred to as "gene surgery," in which not only 
would the normal gene be added but the defective gene itself 
would either be excised or its function suppressed, so that 
it would no longer send out a message for a defective product 
in competition with the message from the inserted "normal" 
gene. 

The technology, which researchers are now attempting 
to develop, involves four steps: cloning the normal gene, 
introducing the cloned genes in a stable fashion into 
appropriate target cells by means of a vector, regulating 
the production of the gene product, and ensuring that no 
harm occurs to the host cells in the patient. Only the 
first step - cloning a normal counterpart of a defective 
gene - is a straightforward matter with current knowledge 

49 



and technology. 

Introducing copies of the normal gene specifically to 
a particular set of target cells can, in theory, be achieved. 
Gene therapy offers the greatest promise for those single- 
gene defects in which an identifiable product is expressed 
in a discrete subpopulation of cells. For example, sickle- 
cell anemia and beta-thalassemia (also called Cooley ' s 
anemia) both involve alterations in the hemoglobin gene that 
is expressed in an accessible subpopulation of cells (that 
is, bone marrow cells) that could be removed from the body 
for gene treatment and then returned to the patient. These 

two diseases have therefore been among the early objects of 

23 

attention for researchers designing gene therapy techniques. 

In most other cases, it is not practical to remove 
the target cells (such as brain cells in people with Tay-Sachs 
disease) for gene repair. A far more promising approach takes 
advantage of the distinctive properties of different cells, 
the unique markers each type of cell has on its surface. 
Once the unique marker for particular cells has been identified, 
it may be possible to construct a special "package," carrying 
copies of the normal gene, that will home flionej in on this marker 
and deliver the new genes exclusively to the cells where the 
defective gene is active. 

Once in the cell, the normal gene may persist as an 
independent unit, like a plasmid, or may integrate itself 
randomly somewhere in the DNA. The principal problem is 
inducing the host cell to produce the proper amount of the 

50 



24 
desired product. Lack of expression of the normal gene 

would prevent the "therapy" from being effective, whereas 

excess production could be deleterious or even fatal. Although 

transposable elements of the sort that permitted new genetic 

material to be inserted in a nonrandom fashion and properly 

expressed in the experiments with fruit flies have not yet 

been identified in human beings, a comparable set of DNA 

appears to exist in human beings. 

A final worry is that introducing a new gene may 
disrupt the functioning of the existing cells. For example, 
were the new piece of DNA to be spliced in the middle of 
another gene, it would create a gene defect that is worse 
than the defect the gene therapy was intended to correct. 

Despite these technical stumbling blocks, two attempts 
have already been made at gene therapy. The first - which 
relied on viral transduction before recombinant DNA tech- 
niques were discovered - occurred more than a decade ago 
and attracted little public attention. Several German sisters 
had a rare metabolic error that caused them to develop a 
high level of a substance called arginine in their blood- 
stream. Left uncorrected, this genetic defect leads to 
metabolic and neurologic abnormalities, including severe 
mental retardation. No treatment for argininemia was known, 
so medical researchers in Germany decided to take advantage 
of a characteristic of the Shope virus, which, although 
apparently harmless to human beings, causes people exposed 

51 



to it to have an unusually low level of arginine. Researchers 
infected the girls with the virus, in the hope that it would 
transfer to them its gene for the enzyme that the body needs 

to metabolize arginine. This attempt to add new genetic 

25 
material failed - that is, the buildup of arginine continued. 

The second attempt at gene therapy in human beings 
involved a controversial experiment in 1980 on patients 
suffering from beta-thalassemia. A UCLA physician removed 
bone marrow cells from a patient in Israel and another in 
Italy, mixed the cells with DNA coding for hemoglobin (in 
the hope that a normal hemoglobin gene would be stably 
incorporated into the bone marrow cells) , and then returned 
the cells to the patients. The attempt apparently neither 
benefited nor harmed the patients. The investigator justified 
the experiment on the ground of previous success in trans- 
ferring foreign genes into the bone marrow of mice. The 
Institutional Review Board at UCLA - which must give prior 
approval for research involving human subjects - had refused 

to give permission to proceed with the experiment on the 

2 6 
ground that more animal work was needed. The experiment 

drew considerable criticism from other scientists, who 

27 
challenged the adequacy of the animal work. NIH, which 

had provided the principal investigator with the funding, 

imposed sanctions, including stripping him of some of his 

28 
grant funds. ' The UCLA experiment generated considerable 

discussion of the ethical issues involved in gene therapy 

beyond the facts of that case and particularly about the 

52 



. . . 29 

appropriate time to initiate gene therapy in humans. 

Popular notions regarding gene therapy range from 
seeing it as a weapon for fighting any disease to hailing 
it as a tool for changing human characteristics, including 
removal of a hypothetical "aggression gene" from hardened 
criminals. These notions are unrealistic. Many diseases 
have multigenic or unknown etiologies; human attributes such 
as kindness or aggression are most certainly the result of 
a complex interaction of multigenic and environmental factors. 
The forms of genetic treatment now being discussed would be 
relevant to such conditions only if the effects of specific 
genes could be identified and particularly if some of these 
genes prove to be major determinants, since attempts to 
change a number of genes at the same time would probably be 
extremely difficult. It is therefore highly unlikely that 
in the forseeable future predictable changes in such at- 
tributes could be achieved through genetic alterations. 

Gene therapy carried out on somatic cells, such as 
bone marrow cells, would resemble standard medical therapies 
in that they all involve changes limited to the cells of 
the person being treated. They differ, however, in that 
gene therapy involves an inherent and probably permanent 
change in the body rather than requiring repeated applications 
of an outside force or substance. An analogy is organ 
transplantation, which also involves the incorporation into 
an individual of cells containing DNA of "foreign" origin. 

53 



Germ-Line Cells 
Thus far, attempts at gene therapy have focused on 
treating a discrete population of patients 1 somatic cells. 
Some researchers believe that certain forms of gene therapy 
that have been considered, such as the use of a virus to 
carry the desired gene to the patient's cells, might also 
affect germinal cells. Furthermore, gene therapy could also 

be applied to fertilized human eggs (zygotes) in conjunction 

31 
with in vitro fertilization techniques. Whereas the effects 

of genetic therapy on somatic cells would be expected to be 

limited to the individual patient treated, DNA therapy of 

fertilized eggs would probably affect all cells - including 

the germ cells - of the developing embryo; assuming normal 

birth, development, and reproduction, the individual would 

then pass on the altered gene to his or her offspring 

according to Mendelian rules. Zygote therapy would thus 

involve an alteration of the genetic inheritance of future 

generations and a significant departure from standard medical 

therapy . 

To date, genetic engineering experiments using zygotes 

have been conducted for academic rather than therapeutic 

reasons . Several laboratories are currently working on 

fertilized mouse eggs. In one experiemnt, mice developed 

from zygotes injected with the rabbit hemoglobin gene were 

reported to contain rabbit hemoglobin in their red blood 

32 
cells." The medical significance is obvious. In a case 

where both parents are carriers of a particular recessive 

54 



disorder the risk of an affected child is one in four. But 
if the relevant normal gene could safely be introduced in 
vitro to a fertilized egg of that couple, the individual 
who resulted from the egg would not have the disease and 
none of his or her descendants would be at risk for that 
disease . 

Zygote therapy differs significantly from gene therapy 
on somatic cells in several ways. First, from the standpoint 
of the individual it may be useful in the treatment of 
genetic diseases, like cystic fibrosis, that affect many 
tissues - lungs, pancreas, intestines, and sex organs - rather 
than a discrete, accessible subpopulation of cells. Success- 
ful treatment at a very early stage of development would 
confer "good" genes to all the organs of an afflicted indi- 
vidual. Second, from the societal standpoint, such therapy 
if ever practiced on a vast scale could potentially reduce 
the overall frequency in the population of genes that usually 
have deleterious consequences, such as the sickle-cell gene. 

Although zygote therapy may hold great promise, it is 
also fraught with technical risks and uncertainties. First 
of all, the technique itself is largely unproven, even with 
laboratory animals. For example, the success rate of 
microinjecting genes into mouse embryos remains low. 
Increasing the amount of DNA injected into a_ zygote rn^akes it 
more likely that a gene will be incorporated, but it also 
increases the mortality rate of embryos. Microinjection 

55 



of DNA into zygotes is obviously not a benign procedure. 
The second major technical drawback at present is 
that transferred genes integrate randomly in the genome. 
Depending on the site of integration and perhaps the physio- 
logical state of the embryo, some of the foreign genes may 

be expressed and others not. Thus far, in experiments with 

33 
mice, genes are rarely expressed in a tissue-specific way. 

Even then, expression of the microinjected foreign gene in 

somatic tissue has not resulted in .-stable inheritance of 

that expression, which is essential if the purpose is to 

introduce a new trait permanently. The consequences of 

having the wrong tissues producing the products of inserted 

35 
genes could be disastrous. 

Finally, as in gene therapy on somatic cells, intro- 
ducing foreign DNA into the zygote may affect the regulation 
of the cell in some undetermined way. Embryological develop- 
ment depends on a precise set of genetic instructions; dis- 
ruption of this process is therefore much more likely to 
have serious adverse consequences than a disruption of the 
regulatory mechanisms operating in a subset of somatic cells. 
Instead of being therapeutic, therapy on zygotes or on more- 
developed embryos might be teratogenic and increase the 
incidence of congenital abnormalities. 

In addition to the technical uncertainties involved, 
genetic manipulation of the embryos raises serious ethical 
concerns. Altering the human gene pool by eliminating "bad" 

56 



traits is a form of eugenics, about which there is strong 
concern. In 1982, the Council of Europe requested "explicit 
recognition in the European Human Rights Convention of the 
right to a genetic inheritance which has not been interfered 
with, except in accordance with certain principles which 

are recognized as being fully compatible with respect for 

3 6 

human rights . " 

Yet the meaning of "respect for human rights" is vague. 
Some favor gene therapy in embryos because it offers a 
treatment other than abortion for genetic defects. But - 
especially in the early years while techniques are being 
perfected - it would probably be standard practice to 
examine the genetic and cytologic "health" of any embryos 
and either not to implant or, if already implanted, to abort 
any found to be abnormal. Not to do so would risk creating 

offspring who have genetic problems created by the "therapy" 

37 

rather than naturally occurring defects. 

Furthermore, unless the presence or absence of a 
genetic defect could be established at a very early stage 
without harm - that is, at or just prior to fertilization 
or in a 2 to 4 cell zygote - it would be difficult to determine 
to whom gene therapy ought to be applied. Yet without such 
determination, the use of gene splicing as a "treatment" seems 
dubious. In most cases identified by genetic screening, both 
parents are carriers of a recessive condition (those who have 
only a single defective gene of a pair and do not manifest 
the disease); in such cases, there is only a 25% chance that 

57 



the disease is present in any zygote. It would not seem 
appropriate to run the risk of zygote therapy when three out 
of four of the potential "patients" do not need treatment. 
Therefore, the technical uncertainties, the ethical 
implications, and the low probability of actually treating 
an affected person are strong contraindications against 
therapy of fertilized eggs or embryos becoming a useful 
clinical option in the near future. 



58 



Genes or Genies ? 

Biotechnology has made rapid advances in the past 
decade and will most likely continue to be a rapidly un- 
folding field. The awesome power entailed in these develop- 
ments can be likened to the genie being let out of the 
bottle. As one observer of the field has noted: 



Some thirty-five years ago physicists learned 
how to manipulate the forces in the nucleus 
of the atom, and the world has been struggling 
to cope with the results of that discovery 
ever since. The ability to penetrate the 
nucleus of the living cell, to rearrange and 
transplant the nucleic acids that constitute 
the genetic material of all forms of life, 
seems a more beneficient power but one that 
is likely to prove at least as profound in 
its consequences. 38 



Stopping any enterprise out of a fear of potential evil not 
only deprives humanity of the fruits of new findings but also 
stifles strong impulses for innovation and change. Never- 
theless, the technological allure of gene splicing ought not 
to be allowed to blind society to the need for sober judgments, 
publicly arrived at, about whether there are instances in 
which the price of going ahead with an experiment or an 

innovation will be higher than that paid by stopping the 

39 ... 

work. In the next two chapters, the Commission examines 

the issues raised by gene splicing - particularly when used 

in human therapy - and the mechanisms for monitoring this 

field. 



59 



FOOTNOTES 



For a history of developments in biochemical and mo- 
lecular genetices, see Horace Freeland Judson, THE EIGHTH 
DAY of CREATION, Simon and Schuster, New York (1979) . 



Thus, the underlying issue in the recombinant 
research debate is the accommodation of knowl- 
edge-thrust and the public interest. Shall 
unfolding knowledge determine our desired 
future or shall our hoped-for future contribute 
to choices regarding the direction of knowledge- 
thrust? 

Clifford Grobstein, Regulation and Basic Research : 
Implications of Recombinant DNA , 51 S. Cal . L. Rev. 
1181, 1199 (1978) . 



Lymphocytes, the cells that produce antibodies (pro- 
teins that protect vertebrates from harm by foreign 
invaders such as viruses and bacteria) , engage in a 
form of natural recombination whereby the DNA segments 
needed to construct antibody genes combine in many 
different ways. Therefore, each clone of lymphocyte 
cells, which protects against a different invader, has 
a somewhat different configuration of genes than the 
other cells in the organism. See Maxine Singer, The 
Genetic Program of Complex Organisms , in 3 The Outlook 
for Science and Technology: The Next Five Years, National 
Academy Press, Washington (1982) at 1, 24-25. 



The four letters are from the name of the base in 
the nucleotide: A for adenine, G for guanine, T for 
thymine, and C for cytosine. 



Raoul E. Benveniste and George J. Todaro, Gene Transfer 
Between Eukaryotes, 217 Science, 1202(1982). 



In higher organisms that reproduce sexually, a high 
degree of genetic variation is produced by the normal 
process of crossing-over of genes in the germ cells. 

60 



Crossing-over, like the other processes, involves the 
formation of new combinations of genes . 



These enzymes, which make it possible to cut DNA at 
predetermined places, exist as part of the defense system 
that bacteria use to respond to foreign DNA (from a 
virus, for example). Restriction enzymes cut the DNA 
of the invader into small pieces, while another substance 
protects the bacteria's own DNA from getting sliced. 



8 



Gerald M. Rubin and Allan C. Spradling, Genetic 
Transformation of Drosophilia Germ Line Chromosomes , 
218 Science, 348(1982). 



Diamond v. Chakrabarty, 447 U.S. 303(1980) 



10 



Lawrence K. Altman, U.S. Unit Backs Human Insulin for 
the Market, N.Y. Times, Oct. 30,1982, at A-l. 



11 



Marjorie Sun, "Interferon: No Magic Bullet Against 
Cancer',' 212 Science 141(1981); Michael Edelhart, 
"Putting Interferon to the Test," N.Y. Times, April 
26,1981 (Magazine), at 30. 



12 



V. R. Racaniello and D. Baltimore, "Cloned Poliovirus 
Complementary DNA is Infectious in Mammalian Cells," 
20 Science 916(1981); P. Charnay et al . , "Biosynthesis 
of Hepatitis B. Virus Surface Antigen in Escherichia 
Coli," 286 Nature 893(1980). 



13 



Baruch S. Blumberg, et aJL. , "The Relation of Infection 
With the Hepatitis B AGent to Primary Hepatic Carcinoma," 
81 AM. J. Pathology 669(1975); Mark Pasek et al . , 
"Hepatitis B Virus Genes and Their Expression in E-Coli , " 
282 Nature 575(1979). The production vaccines for 
diseases affecting domestic animals is also being very 
actively pursued. Other agricultural uses (engineering 
new traits in plants and animals rather than breeding 

61 



14 



15 



16 



17 



18 



19 



for these traits) , as well as industrial and mining 
uses for gene splicing, are being vigorously explored 
in academic and commercial laboratories in this country 
and elsewhere. Office of Technology Assessment, U.S. 
Congress, Impacts of Applied Genetics - Micro-Organisms , 
Plants, and Animals, U.S. Government Printing Office, 
Washington, (1981) . 



Richard A. Miller, et al. , "Treatment of B-Cell Lymphoma 

with Monoclonal Anti-Idiotype Antibody," 306 New. Eng. 
J. Med. 517(1982) . 



See, e.g., Alan E. Emery, "Recombinant DNA Technology," 
2 Lancet 1406 (1981) . 



Arlene Wyman and R. L. White, "Restriction Fragment 
Length Polymorphism in Human DNA," 7 7 Proc . Nat ' 1 . Acad 
Sci. 6754(1980); D. Botstein et. al . , "Construction 
of a Genetic Linkage Map in Man Using Restriction 
Fragment Length Polymorphisms, 32 Am. J. Human Genetics 
314 (1980) . 



Y. W. Kan and A. M. Dozy, "Antenatal Diagnosis of 
Sickle-Cell Anemia by DNA Analysis of Amniotic-Fluid 
Cells, 2 Lancet 910(1978). 



David T. Bishop, et al. , "The Number of Polymorphic 
CNA Clones Required to Map the Human Genome", in Bruce 
Weir, ed., Statistical Analysis of DNA Sequence Data , 
(in press); Mark H. Skolnick and U. Francke , "Report 
of the Committee on Human Gene mapping by Recombinant 
DNA Techniques," 32 Cytogenetics & Cell Genetics 194 
(1982) . 



Savio Woo, e_t a^L. , "Alpha-1 Antitrypsin Deficiency 
and Pulmonary Emphysema: Identification of Recessive 
Homozygote by Direct Analysis of the Mutation Site in 
the Chromosomal Genes," Cold Spring Harbor Symposium 
on the Application of Recombinant DNA to Human Disease, 
1982 , (in press) . 

62 



20 



President's Commission for the Study of Ethical 
Problems in Medicine and Biomedical and Behavioral 
Research, Screening and Counseling for Genetic Conditions, 
U.S. Government Printing Office, Washington, (1983). 



21 



Eventually, medical scientists may be able to identify 
not only restriction enzyme sites that are tightly linked 
to known gene defects and some that are actually located 
at the exact site of a mutation, but also the presence 
or absence of genes that are responsible for other 
human characteristics, even those that would not be 
detectable through looking for their biochemical 
"footprints," as is now done, for example, in measuring 
the level of serum phenylalanine in screening for 
phenylketonuria (PKU) . Of course, most interesting 
human characteristics are believed to result from the 
interaction of the environment with a number of genes , 
rather than a single gene, which would make "screening" 
an exceedingly complex task. 



22 



Victor A. McKusick, Mendelian Inheritance in Man , 
Johns Hopkins University Press, Baltimore , (6th ed.,1982). 



23 



Richard Roblin, "Human Genetic Therapy: Outlook and 
Apprehensions," in George K. Chacko, ed., Health Handbook , 
Elsevier-North Holland Pub. Co., New York (1979) at 
103, 108-12. 



24 



Jean L. Marx, "Still More About Gene Transfer," 218 
Science 459 (1982) . 



25 



W. French Anderson, "Genetic Therapy," in Michael 
P. Hamilton, ed . , The New Genetics and the Future of Man , 
William B. Eerdmans Pub. Co., Grand Rapids, Mich. (1972) 
at 109, 118. 



26 



President's Commission for the Study of Ethical 
Problems in Medicine and Biomedical and Behavioral 
Research, Protecting Human Subjects, U.S. Government 
Printing Office, Washington (1981) at 177,182. 



63 



27 



28 



29 



30 



31 



In the opinion of Dr. Bob Williamson, a molecular 
geneticist at the University of London: 



Cline's experiments were fundamentally unethical. 
His own work on mice shows that there was no 
basis for hope that globin gene insertion into 
marrow cells could give clinical benefit at that 
time. (The subjects') families were given hope 
that the gene therapy might help them in their 
fight for survival. 

It is unacceptable that patients should be 
misled in this way. 

Bob Williamson, "Gene Therapy, 298 Nature 416, 418(1982) 
See also, Nicholas Wade, "UCLA Gene Therapy Racked 
by Friendly Fire," 210 Science 509(1980). 



Marjorie Sun, "Cline Loses Two NIH Grants," 214 
Science 1220(1981) . 



A scientist and an ethicist at the National Institutes 
of Health suggest that three conditions should be met 
in animal studies before it is ethical to initiate trials 
of human gene therapy: (1) the new gene should be put 
into target cells and remain in them; (2) the new gene 
should be regulated appropriately; and (3) the presence 
of the new gene should not harm the cell. W. French 
Anderson and John C. Fletcher, "Gene Therapy in Human 
Beings: When is it Ethical to Begin?," 303 New Eng. 
J. Med. 1293(1980). See also, Arno G. Motulsky, 
"Impact of Genetic Manipulation on Society and Medicine," 
Science (in press) . 



Williamson, supra note 27. 



The approach would involve the following: (1) isolating 
and amplifying the desired gene by standard recombinant 
DNA techniques, (2) removing a mature ovum from a woman 
and fertilizing it in vitro , (3) injecting copies of 
the cloned gene into the fertilized egg (zygote) using 
microsurgical techniques, and (4) implanting the geneti- 
cally altered zygote into the woman's uterus. 

64 



32 



33 



34 



35 



36 



37 



38 



39 



Thomas E. Wagner, et a_l . , "Microinjection of a 
Rabbit B-globin Gene into Zygotes and Its Subsequent 
Expression in Adult Mice and Their Offspring," 78 
Proc. Nat'l. Acad. Sci . 6376(1981). 



Ralph L. Brinster, et a^. , "Somatic Expression of 
Herpes Thymidine Kinase in Mice Following Injection 
of a Fusion Gene into Eggs," 27 Cell 223(1981). 



Richard D. Palmiter, et al. , "Differential Regulation 
of Metallothionein-Thymidine Kinase Fusion Genes in 
Transgenic Mice and Their Offspring," 29 Cell 701(1982) 



Bob Williamson, "Reintroduction of Genetically 
Transformed Bone Marrow Cells into Mice," 284 Nature 
397 (1980) . 



Council of Europe Parliamentary Assembly, 23rd Ordinary 
Session, "Recommendation 934," Strasbourg (1982). 



Paul Ramsey, Fabricated Man , Yale University Press, 
New Haven, CT (1970) at 75-97. 



Nicholas Wade, The Ultimate Experiment , Walker and 
Company, New York (1977) at 2. 



As Chief Justice Burger observed, some of the arguments 
presented against issuance of a patent for the oil-eating 
bacteria "remind us that, at times, human ingenuity 
seems unable to control fully the forces it creates - 
that with Hamlet, it is sometimes better 'to bear those 
ills we have than fly to others that we know not of. 
Diamond v Chakrabarty, 447 U.S. 303, 316(1980). 



i ii 



65 



Session 1 

The Topic and the Participants 



Session 1 



THE TOPIC AND THE PARTICIPANTS 



PURPOSE 



GOALS 



The introductory session begins to focus on the 
implications of new developments in biotechnology 
for human values and future life, and on how our 
relationship with God can inform and support us in 
our choices as we work for both personal and public 
consensus concerning responsible, wise and faith- 
ful uses of these new powers. 

This session is designed to: (1) begin to get to 
know each other and the special interest each brings 
to the topic, " Good Genes ?" : Emerging Values for 
Science, Religion and Society ; (2) begin to set the 
stage for ethical deliberation in a seminar style 
of free and open-ended discussion by encouraging 
trusting relationships built on accepting people, 
whatever their starting points, by affirming that 
we can disagree in love and out of individual belief, 
while agreeing that we all wish to become more aware 
and responsible in addressing the new questions of 
our times; (3) raise some of the issues the series 
will address and the rationale and format of the 
sessions; and (4) initiate commitments for partici- 
pation. 



SUGGESTED 
OUTLINE: Prayer 



Social event - meal, coffee and dessert, or refresh- 
ments 



68 



Introductions and expectations of participants 

Reference to Introductory Material, A, B, C 

"Who did what?" 

An Overview of the Sessions 

Individual and Group Projects 

News Articles 

Background Articles and Profiles in Part II 

Transitions 

Closing Prayer — Eucharist 

MATERIALS: Name tags - full name on front; address and tele- 
phone number on back 

Paper and pencils 

Course books 

Meal or refreshments 

Newsprint, masking tape, magic markers 

Copies of "Who Did What?" 

Bibles, hymnals and Prayerbooks 

Bread and Wine for Eucharist 
****************** 

THINGS YOU MIGHT DO 
Welcome 

As people arrive, complete registrations, invite them to fill 
out name tags and using paper and pencil either by a symbol or 
a few words, depict any special interest or expectations they 
have in the study topic " Good Genes?": Emerging Values for 
Science, Religion and Society . 

69 



The session may if desired be done in the context of the 

Eucharist. 

Gather in God's Name 

Opening Prayer: For the Human Family BCP p. 815 

Social Event - meal, dessert or refreshments 

Introductions and Expectations of Participants: Have people 

break into pairs to discuss: 

(1) What excites me about this series? 

(2) What troubles me about it? 

Gather the group and ask each person to present his/her spe- 
cial interest or expectation in the topic and at the same time 
introduce her/himself to the group. 
Reference to Themes of Introductory Material 

The convenor or leader should refer to the Introductory Mater- 
ial: (A) Introduction; (B) Theological Overview and A Context 
for Ethical Decision-Making; (C) The Dawn of a Scientific Era, 
and either review it with those who have already read it or 
encourage participants to read these sections prior to the 
next meeting. Indicate that the themes of this material will 
be part of every session. Give participants a chance to share 
their reactions and ask questions. This material is available 
for those interested, but is not prerequisite for the series. 
"Who did what?" 

Distribute the list of names and events, and, working in twos 
or threes, attempt to match names with accomplishments. Pro- 
vide the correct match set for the group. This will help people 

70 



to begin working in small groups and to participate in a 
shared quest. 

Outline of Future Meetings 

Discuss the purpose and goals of the sessions which will be 
part of your series. Purpose and goals might be written on 
newsprint and posted. Answer any questions the group has. 
Commitments ; Individual and Group Projects 

Mention opportunities for individual and group projects. Pro- 
jects might include: (1) research of biotechnology companies; 
(2) policies of sperm and ova banks; (3) clipping relevant news 
articles during the series; (4) research of consent procedures, 
patient rights statements, etc. in a local hospital and in a 
teaching and research center. 
Optional Endings: 

(1) The session may end here with people indicating their 
interest in one or more areas. Close with prayer and a 
reminder of the time and place of the next meeting. In- 
troduce the Bible reading assigned at the end of the 
session and explain how the next session will begin. 

(2) Pray for the World and the Church. Form I, p. 383 BCP , 
or Form IV, p. 38 8 BCP. 

Exchange of Peace 

Prepare the Table 

At this time, the name tags and the interest papers made 

earlier in the session are offered. Explain that the name 

tags will be put in the form of a participant list to be handed 

out at the next session. 

71 



Celebration of the Eucharist 

After the Prayer of Thanksgiving and before the Blessing and 

Dismissal invite the group to indicate which of the individual 

or group projects each wants to do. Close with a Blessing 

and Dismissal. (Be sure you have called attention to the Bible 

reading assignment at the end of the session and how it will 

be used to begin the next meeting.) 



pncmmnnnnniin^^ 



G>^o<£>P£3 




72 



"WHO DID WHAT?" 
Listed below are people and events that have had an effect on 
our world in biological developments and with each of us either 
directly or indirectly. With how many are you familiar? By 
putting the appropriate letter in the box next to each name(s), 
see how many you can identify. At the conclusion of this iden- 
tification exercise, have people talk about the experience. 



Gregor Mendel 



/__/ t. 1973 meeting of scientists who 

expressed concern about potential 
hazards in connection with micro- 
biological research 



Ernst Heinrich 
Haeckel 



Oswald Avery 
Maclyn McCarty 
Colin MacLeod 



/ / r 



/ / 



worked out the structure of a 
protein molecule, the alpha- 
helix, and brought helical shape 
to light and presaged the discov- 
ery of the structure of DNA 

discovered the difference between 
DNA and RNA 



5 
6 



Friedrich Meischer /_/ e. coined the term "genetic engin- 
eering" 

William Bateson / / d. Editor, Encyclopedia of Bioethics 



Linus Pauling 



Francis Crick 
James Watson 
Maurice Wilkins 



/ / b. Chairman of the President's Com- 
mission for the Study of Ethical 
Problems in Medicine and Biomedi- 
cal and Behavioral Research 

/__/ q. received 1962 Nobel Prize for 
mapping the structure of DNA 



8 



Rosalind Franklin / / f 



Archibald Garrod / / x 



pioneered a technique of recom- 
bination by a method of chemi- 
cally severing and bonding segments 
of DNA that could be applied to 
masses of bacteria 

isolated ribonucleic acid RNA in 
1892 and identified the four 
bases of necleic acids 



73 



10. Rollin D. 

Hotchkiss 



12 



13 
14 



15 
16 



17 



18 



19 



20 



/ / w. 



Asilomar Confer- 
ence / / 



Albrecht Kossel 



Erwin Chargaff 



P. A. Levene 



Robert Pollack 



/ / 



Paul Berg 
David Jackson 
Robert Symons 

Herbert Boyer 
Stanley Cohen 



Morris B. Abram 



/ / 



/ / 



discovered the 
DNA in 1868 



existence of 



11. Gordon Conference / / a. 



/_/ 1. 

/ / n. 



major contributors in bioethics 
from perspectives inclusive of 
Christian tradition, belief, 
practices and concerns 



,1975 conference of scientists 
from around the world to deal 
with potential biohazards in con- 
nection with recombinant DNA 
molecules 

process philosopher 

discovered a chemical basis for 
the action of enzymes and bac- 
terial transformation 



/ / i. coined the term "genetics" 



H. Gobind Khorana / / z. 



m, 



/ / J. 



monk in Brno, Moravia whose ex- 
periments in plant hybridization 
in 1865 traced the consequences of 
breeding different strains of peas 

postulated that site of heredity 
was in the nucleus with here- 
ditary transmission from parent 
to offspring the result of the 
union of sperm and egg 

found that an enzyme could anneal 
end to end linkages of separate 
segments of DNA 

planned first experiment for ar- 
tificially directed chemical 
recombination of DNA 

director of The Hastings Center 
Institute of Society, Ethics and 
The Life Sciences founded in 1969 
for professional investigation of 
the ethical impact of the revolu- 
tion in biological science 



74 



21 



Daniel Callahan 



/ / k. Australian professor of biology 
active in efforts of the World 
Council of Churches 



22 



Warren Reich 



/_/ u. Cold Spring Harbor biologist who 
first spoke about possible dan- 
gers of inserting hybrid DNA 
into E. coli 



23. Alfred North 
Whitehead 



/ / 



discovered base ratios of con- 
stituents of the DNA molecule 



24 



Charles Birch 



/ / 



scientist whose crystallographic 
photographs of light diffracted 
from DNA helped provide crucial 
information for discovery of 
structure of DNA 



25. John Fletcher / / 
Joseph Fletcher 
James Gustafson 
Richard McCormick 
J. Robert Nelson 
Paul Ramsey 
Roger Shinn 
Harmon Smith 



recognized the relationship be- 
tween enzymes and genes as that 
of chemical reactions 



26. Matthew Meselson / / 



v. Harvard professor of biology who 
worked to rid world of biological 
weapons 



75 



"WHO DID WHAT?" 



Answers 


1. 




z 


2. 


— 


s 


3. 


— 


n 


4. 


— 


w 


5. 


— 


i 


6. 


— 


r 


7. 


— 


q 


8. 


— 


p 


9. 


— 


o 



10. 


- e 


11. 


- t 


12. 


- y 


13. 


- X 


14. 


- g 


15. 


- c 


16. 


- h 


17. 


- u 


18. 


- ra 



19. 
20. 
21. 
22. 
23. 
24. 
25. 
26. 



f 
b 

J 
d 

1 

k 

a 

v 




76 



TRANSITIONS 



BETWEEN-SESSION BIBLE REFLECTION 



*Bible is used for source of insight as people reflect on 
their experiences in light of the Biblical tradition. The 
use of a Bible commentary may be helpful for a deeper appre- 
ciation of this tradition and for setting the various passages 
in their historical context. 

Scripture passages suggested for between-session reflection 
and for in-session Bible discussion exchanges in the next 
meeting are examples of possible sources of insight. The 
questions that accompany the passages help to provide a focus 
for the theme of the next session. 

After reading the questions that accompany the given passages 
and getting a sense of what the theme will entail, some other 
scripture passages might come to mind for purposes of further 
reflection. Participants may want to pursue these as well and 
report on their findings at the Bible discussion exchange at 
the next meeting. 

TRANSITION 
FROM SESSION ONE TO SESSION TWO 
SUGGESTED SCRIPTURE: 
Luke 4:1-21 

FOCUSING QUESTIONS: 

1. There are reservations within science and within religion 

77 



for not placing complete confidence in technological de- 
velopments as a means for achieving total well-being. 
What reservations do you see from the viewpoint of science? 
of religion? ' 

2. Luke reports Jesus' ministry as bringing to completion the 
mission of Isaiah. Does biology in our time promise to 
fulfill that prophetic word of healing? 

3. Is there a connection between Jesus' temptation by the 
devil and our penchant for the latest technological de- 
velopment? 

In Session Two, "Cells On The Move", we shall begin to probe 
the complexity of specific cases in which value dilemmas arise 
with the advance of modern biotechnology and its applications 
in the area of genetic screening. 



78 



Session 2 

Cells on the Move 



CELLS ON THE MOVE 

The connections between the new developments in science 
and the questions related to the cases in this and succeeding 
chapters are not always clear. Scientific research moves 
along pursuing the search for knowledge. However, scientific 
research is imbedded in the politics, economics, special in- 
terests, and/or, ideologies of the times. This social context 
in which science and scientists operate influences what ques- 
tions are asked and how, and what answers are acceptable. While 
there is much discussion and vast differences of opinion, most 
people would agree that knowledge itself is without moral value. 
Values have a particular role as knowledge is sought, used or 
applied. When technologies are employed for the purpose of 
applying knowledge value questions become important. 

In this session we move from our review of the new scien- 
tific era to some cases and questions about the application 
of scientific knowledge in one area. Our concern will be with 
screening for genetic problems or diseases and the treatment 
or non-treatment of certain disorders. 

We begin with an exercise to illustrate how people per- 
ceive the same data differently. We bring to a common exper- 
ience our individual selves, our particular histories, reasoning 
skills, varieties of experience, education and belief. It is 
because of this diversity that we, even with the best of in- 
tention, come to different decisions or conclusions. How can 
we decide together about what course of action to pursue when 

81 



two or more courses seem to have similar value or merit? 

Following the introductory exercise and discussion of the 
questions accompanying the Bible reading assigned at the end 
of the first session, there is a brief exercise to see what 
the participants know about mass screening. The leader or 
planning group for this session will want to look up the ans- 
wers concerning mass screening or call the health department 
or area women's hospital for the information. 

The cases presented for this chapter raise questions and 
focus on dilemmas encountered in decisions about genetic dis- 
orders. It is not necessary to use all four cases; one or two 
may be adequate. We suggest that someone in the group read the 
case aloud and then focus on the questions for discussion. 
Sometimes, group leaders may choose to use the cases without 
the suggested questions, thereby allowing for questions to 
emerge from the study group. No case is complete. Everyone 
will want more information. Sooner or later, however, decisions 
must be made on the basis of the information available. The 
background readings which follow the cases will be useful for 
those participants who are eager to know more about the issues 
in screening for genetic disorders. 



82 



Session 2 



CELLS ON THE MOVE 



PURPOSE 



GOALS : 



The purpose of this session is to increase aware- 
ness of possibilities for knowledge of genetic 
disorders and how such information affects indi- 
vidual, parental, familial and societal respon- 
sibilities and decisions. 

The session is designed to (1) increase under- 
standing of ways of gaining information about po- 
tential genetic disorders, (2) increase under- 
standing of how such information raises ethical 
issues for human response and decision, (3) in- 
crease understanding of the diversity and variety 
of human perspectives that lie within ethical 
dilemmas and (4) engage participants in considera- 
tion of specific cases. 



COMPONENTS : Prayer 



Bible reading discussion 
Perception Exercise 
Mass Screening Exercise 
Four Cases : 

(1) PKU: Second Generation Effects 

(2) Severe Immunodeficiency 

(3) The Threat of Hemophilia 

(4) Bone Marrow Transplant 
Background readings 



Transition 



83 



PERCEPTION EXERCISE 
Present the group with the following diagram, drawn large on 
a piece of newsprint. Ask the group: 

(1) "How many squares do you see?" 

(2) "How many squares can you possible construct from 
the diagram?" 









1 














— ■ . i 









The figure has 



squares, although few people will answer 



correctly at first. Point out that the exercise exemplifies 

* 

our usual decision-making process. Frequently there are more 

choices available to us in making a decision than we take into 
consideration. This is true not only of our own personal every- 
day life decisions, but also others. This exercise attempts 
to demonstrate that our awareness of perceptions and presuppo- 
sitions is important — that the way we experience problems or 
perceive people can circumscribe the choices we think we have 
and so influence the alternative we finally choose. 



NB. The process of decision-making involves getting alter- 
natives out in the open for reflection and testing before 
deciding . 

84 



The second question conveys an element of uncertainty that 
exists in science. The figure could be three dimensional and 
have many more squares than are observable. The answer then 
would be equal to or greater than squares ( = ) . 



85 



Mass Screening in Your State 
(Diagnostic Testing) 
Directions : Either individually, or in small groups of two 
or three, indicate by check marks whether each of the follow- 
ing list of diseases is required by law for screening or whether 
it is optionally screened and when (prenatally, at birth, or 3 
to 6 weeks after birth, or other) the screening is done. Some- 
one in your study group might volunteer to find out the accurate 
answers for your state by calling the State Health Department 
or local maternity hospital. 

Is Screening Screened 
Disease Required? Anyway? When? 

Yes No Yes No 

1. PKU 

2. Sickle-cell 

anemia 

3. Tay-Sach's 

4. Maple syrup 

urine 

5. Galactosemia 

6. Homocystinuria 

7. Adenosine deamin- 

ase deficiency 

8. Histidinemia 

9. Hypothyroidism 

10. Huntington's 
Chorea 

a. Who pays for the screening? 

86 



b. Do parents give consent for screening? 



c. Are parents informed about the results of screening, whether 
negative or positive? 



87 



4 Cases 



I. VKV Second 'Generation Effects 
2> Severe Jmunadefrciency 
5. The Threat of Hemophilia, 

4. Bona Marrow Transplant 




2.1 PKU: SECOND GENERATION EFFECTS 

Phyllis and Edward, a young married couple, want to give 
birth. However, they want to proceed knowingly and respon- 
sibly because of Phyllis 1 background. At birth, she had been 
identified as a PKU child by means of the mandatory phenylke- 
tonuria (PKU) newborn screening program. She had been treated 
for this inability to metabolize phenylalanine, an amino acid 
present in many protein foods, by means of a special diet from 
early infancy to school age. While she has had to maintain a 
low-protein diet, she has shown no signs of mental retardation 
or ill effects from her condition. 

Grateful for the personal benefits accrued from the screen- 
ing procedure and the subsequent treatment, Phyllis and Edward, 
nevertheless, are sensitive and compassionate with respect to 
those for whom retardation has been a condition of life. A 
neighbor, Mrs. Johnson, whom they respect and admire, has dis- 
closed her feelings and insights on being the mother of a child 
retarded of PKU. Mrs. Johnson feels that her child's life has 
not been meaningless. The child, Becky, has helped her and 
others come to terms with sorrowful conditions that exist in 
life and to comprehend the worth of patience, understanding, 
and compassion which Mrs. Johnson feels all people need to re- 
ceive and to practice with one another. She loves and accepts 
Becky and while she would never say that it had been worth- 
while that her child was born retarded, still she feels Becky 
has borne a special gift of her own to life. Based on her ex- 
perience, Mrs. Johnson simply feels that so long as cruelty 

89 



prevails in so much of life she would not add to weight of 
choice to kill rather than to let live. 

Appreciative of their neighbor's experience and point of 
view, and aware of Phyllis' history, Phyllis and Edward recall 
having discussed with their minister during pre-marital coun- 
seling the special circumstance they would face should they 
want to give birth. They understood that it would be impor- 
tant to consult their physician before getting pregnant. Dr. 
Baker, the physician, is aware of recent medical findings sur- 
rounding the ongoing effects of PKU in what is known at Mater- 
nal PKU. He refers Phyllis and Edward for genetic counseling. 

This counseling provides Phyllis and Edward with additional 
information. They discover there is a lot not known about preg- 
nancy in women with PKU. They learn that it has been found that 
high levels of circulating phenylalanine in pregnant PKU women 
produce microcephaly and brain damage in the fetus, with conse- 
quent mental retardation in the child, in at least 92 percent 
of cases, even when the fetus itself is free of the defect and 
has a normal phenylalanine blood metabolism. It is explained 
to them that a normal phenylalanine blood value is 2; classi- 
cal or severe PKU is defined as a blood level of 20, and between 
the two extremes a gradient of severity occurs. Many people 
with levels of 6, 8, 12, or even 14, escape mental retardation 
and may never know they have the condition. However, what is 
not known is how high the level must be for fetal damage to 
occur. If a level of 10 doesn't damage the mother, is the 

90 



fetus also safe? That is the unanswered question. 

Finally, Phyllis and Edward are told that research is 
underway to determine whether there is a possibility of put- 
ting a protein-free diet in place before and during pregnancy 
so as to prevent damage to the fetus of women with varying PKU 
levels. This awaits the results of a retrospective study that 
will collect information on the children of women who in a 
screening program were identified as having low level PKU from 
umbilical cord blood obtained at every hospital delivery in one 
state over a five year period. This study will seek to deter- 
mine just how much a non PKU child is affected, if at all, by 
the time spent in utero with above-normal circulating pheny- 
lalanine. 

Phyllis and Edward are informed that long-term plans are 
for a prospective study in which PKU women would be identified, 
educated about Maternal PKU, treated with the special diet be- 
fore and during pregnancy, and followed through pregnancy and 
delivery, with further long-term studies on the children. 

Phyllis and Edward thank the counselor for the information 
and return home to think about their situation. 

Questions : 

1. What would your decision be if you were in Phyllis and 
Edward's position about risking pregnancy? What factors 
are important in your decision? 

2. What if you and your spouse disagreed about what the de- 
cision should be? How would you resolve the disagreement? 

91 



3. Is there an appropriate role for counselors (i.e. medical, 
genetic, pastoral, other) in relating to Phyllis and Ed- 
ward? If you were in their situation would you seek 
counseling help? 



• 



92 



2 . 2 SEVERE IMMUNODEFICIENCY 
Sun Choo Kim gave birth to a baby boy who was diagnosed 
as having a severe combined immunodeficiency i.e. he was un- 
able to produce his own antibodies to combat infection. Dur- 
ing the first three months of life, the baby was protected by 
maternal antibodies which remained active. After that time, 
he was defenseless to disease. One month later he died. 

Sun Choo became pregnant again. Amniocentesis was performed 
at sixteen weeks. The results showed that she would give 
birth to another boy. At this point the Kims knew that if the 
pregnancy was carried to term, there would be a fifty percent 
chance of the newborn having a severe combined immunodeficiency. 
With this condition the child would die unless he lived in a 
sterile bubble in order to significantly reduce infections. 
The cost of the (bubble) sterile environment is about $70,000. 
There is no cure for this condition. 

Questions : 

1. Who should be involved in decisions about (a) neonatal 
treatment or (b) abortion in this case: 
. Sun Choo Kim? 
. the Kims? 
. their physician? 
. the court? 

. some other representative of society? 
Who bears the responsibility for decisions? 

93 



2. What would you choose in this situation: 

(a) selective abortion? 

(b) carry fetus to term? 

(c) if newborn is diseased, allow the infant to die? 

(d) if newborn is diseased, try to secure the sterile 
environment? 

(e) some other option? 

3. In what order should the issues around this case be con- 
sidered: socio-economic, psychological, medical, moral/ 
ethical, religious? How does the order or priority given 
to these issues affect what might be done? 

4. What about the allocations of resources? How can the 
building and maintenance of the bubble and its effects 
upon the child be justified? 



94 



2.3 THE THREAT OF HEMOPHILIA 

Ruth Mason's sister has just had a child--a boy. Within 
hours it is clear that the child has classic hemophilia. Among 
the children of Ruth's sisters he is the second son to be born 
with hemophilia. Because hemophilia of this kind (type A) is 
caused by a gene on the X-chromosome which is passed from mother 
to daughter, Ruth has a one in two chance of being a carrier her- 
self. If she is, approximately half of her male offspring would 
receive the X-chromosome with the hemophilia gene and half would 
be normal. She had been planning to have a child and now wants 
desperately to know what she can do in these circumstances. 

Her obstetrician tells her about a new test which she 
could take before becoming pregnant to determine if she were 
a carrier of hemophilia. He emphasizes that if the test were 
positive, it definitely means she has the gene, but that it 
would only pick up 80-95 percent of the women who are carriers. 
Should she become pregnant, the obstetrician informs her that 
a prenatal test called amniocentesis could be done around the 
16th week of her pregnancy which would tell her within days 
whether or not she was carrying a male fetus. In the current 
state of our technology, however, he points out that there 
would be virtually no way to ascertain whether the fetus was 
normal or destined to be a hemophiliac. The doctor tells Ruth 
that she could then choose an abortion during the second tri- 
mester of her pregnancy. Ruth realized that if she were posi- 
tively identified as a carrier, she would then be faced with 

95 



the prospect of an abortion where there would be a 50:50 chance 
of aborting a hemophiliac male--or a normal son. And if she 
were negative, she still couldn't be sure of not having a hemo- 
philiac because the carrier detection test misses almost one 
in every five who have the hemophilia gene. 

Questions: 



1. If you were Ruth would you go ahead and take the test to 
determine if you are a carrier? How did you decide? 

2. Assuming that you were a carrier, would you decide to be- 
come pregnant with a 1 in 4 (25%) chance of having a 
hemophiliac child? 

Ruth Mason decides to find out more about the disease and 
calls the National Hemophilia Foundation which tells her of 
new developments in the care and treatment of hemophiliac boys 
There is a new means of preparing the clotting factor (cryopre- 
cipitate) and home therapy programs which greatly reduce the 
cost of home treatment to approximately $6,000 per year. She 
also learns that a prophylactic schedule of treatments greatly 
reduces the insidious bleeding which in the past caused much 
of the disability (by causing joint problems) experienced by 
hemophiliacs . 

She returns to the obstetrician troubled and confused. 

Questions : 



96 



3. How might you go about deciding whether to become preg- 
nant? 

4. Are there any other options for you to consider? 



97 



2.4 BONE MARROW TRANSPLANT 

A baby boy is hospitalized at the age of nineteen weeks. 
A diagnosis made that he suffers from a genetically determined 
bone marrow disorder. 

The child responds to appropriate antibiotic therapy but 
has to be readmitted to the hospital five times during the next 
nine months with a variety of ailments. Each time he responds 
to treatment, but the underlying condition of the bone marrow 
disorder remains. This pattern continues for another year. 

The child's parents then ask the tending physicians if 
there are any alternatives that might cure their child. 

The alternative that is outlined consists of admitting the 
child to a medical research center to undergo a bone marrow 
transplantation with bone marrow from his four year old brother. 

The proposed treatment is explained to the parents in more 
detail. It would involve a combination of total body irradia- 
tion and rabbit antihuman serum to destroy the child's dys- 
functional stem cells. The child would be maintained in isola- 
tion (laminar flow room) to minimize exposure to infection. The 
goal of the treatment would be the engraftment of the donated 
marrow functioning. 

The parents are interested and encourage the physicians 
to pursue this alternative. 

The physicians make plans to proceed. They need to obtain 
informed consent both with respect to the child and his brother. 

The Human Subjects Committee of the medical center when 

98 



reviewing the proposed treatment grants approval with the 
condition of obtaining informed consent for the child and the 
appointment of a guardian ad litem for the minor donor. 

Questions ; 

1. What factors might the parents consider in deciding whether 
to subject their sick child to the potentially therapeutic 
procedure? 

2. Which factors are medical or scientific? Which are ethical? 
What are the faith or religious dimensions within the sit- 
uation? 

3. In some states a guardian ad litem is used in cases involv- 
ing donation by a minor. How does this serve the interests 
of: 

the minor? 

the parent/s? 

the physician/s? 

the hospital? 

the insurance companies? 

4. Bone marrow transplants are costly procedures (one case of 
record cost $150,000). How should economic factors influ- 
ence decisions about: 

a. continued medical research? 

b. individual needs? 

c. social priorities? 



99 



MASS GENETIC SCREENING: THE ISSUES 

By: Jan Wojcik 

During the early 1960s, scientists developed a simple, 

cheap, and accurate test for PKU, requiring for analysis only 
a few drops of blood from a newborn baby's heel. If a detec- 
ted child were put on a special diet of mushy pablum until it 
was four to six years old, resisting every temptation to snitch 
a snack of normal food, it could stave off mental retardation. 
Because it was cheaper to screen all newborn babies for the 
disease than to pay for the institutional care of the few who 
would be afflicted, and because no one really could oppose any 
hopeful therapy when it cost so little, almost every state 
makes screening newborns for PKU mandatory. 

As one blood or urine sample could serve for many tests, 
the stage was set for screening for other genetic diseases as 
tests for them became available. Since 1974, New York State 
has been screening for PKU, sickle-cell anemia, maple syrup 
urine disease, galactosemia, homocystinuria, adenosine deamin- 
ase deficiency, and histidinemia . Other states have similar 
programs . 

As genetic science developed in the 1960s, and as the 
public became aware of genetic disease, adults in certain 
communities were urged to be screened for certain indigenous 
genetic diseases. Eastern European Jews occasionally carry 
recessive genes for Tay-Sach's disease, a rare but fatal dis- 
order of an infant's nervous system. One of every ten black 
Americans carries the "trait" or recessive gene for sickle-cell 
anemia, an ultimately fatal disease. The motive behind screen- 

100 



ing adults was alerting them to their possible carrier status 
so that they might seek out mates who didn't carry the re- 
cessive genes. If detected carriers were already married to 
each other, they could be urged to seek genetic counseling 
before bearing a child. 

More recently, these mass genetic screening practices have 
become controversial. Paul Ramsey raises the issue of possible 
false-positive test results which could inflict the pablum diet 
on a healthy child and cripple it. Phillip Reilly points out 
that Rhode Island screens for maple syrup urine disease which 
has an incidence of only one in 300,000 birth; a child with 
the disease is likely to be born in such a small state once in 
a decade. He suggested that we should rather screen for more 
common, treatable diseases. Some geneticists have called for a 
moratorium on screening until it can be examined by the whole 
community, fearing that screening programs aimed at minority 
groups could easily be perverted by some unscrupulous power into 
genocidal restrictions on reproduction. Some ethicians fethicists] 

see the danger that a biochemical abnormality "which is only a 
manifestation of normal genetic heterogeneity may initially be 
regarded as 'deviant.'" 2 In another place Marc Lappe warns of 
the deleterious side effects information about a person's genes 
could have on self-image. If an XYY baby boy is expected to 
develop into a criminal (after a controversial study found that 
a larger percentage of XYY males were found in prison popula- 
tions than in the population at large) and is treated with 
suspicion, he just might do so. Insurance companies might deny 

101 



coverage to carriers of various diseases. Worst of all, a 
carrier might come to hate himself or herself, assuming blame 

for "defects of nature" over which he or she has no control 

3 
and which, ironically, aren't even detrimental to health. ' 

Ramsey suggests that "in the face of the mounting genetic infor- 
mation, there may indeed be a 'right not to know,' if all of 
life's spontaneities are not to be toned down to the impersonal 

level of the laboratory or all of us learn to smell disease 

4 
everywhere. "■ 

MANDATORY OR VOLUNTARY 

The practical focus of the debate over screening is whether 
it should be mandatory or voluntary. A screen is much easier 
and more efficient if it is done routinely with no questions 
asked. Patients or parents aren't likely to be scared off by 
lengthy solicitations for their consent, or by their (from the 
screener ' s point of view) unwarranted fears. In a letter to 
the editors of The New England Journal of Medicine , five mem- 
bers of the Task Force on Genetics and Reproduction at Yale, 
Subsection on Heterozygous Carriers, wrote: "We believe that 
the right of a newborn infant to intellectual development takes 
precedence over the parent's right to allow or to refuse PKU 
screening for their child. As we approach a period when in 
utero therapy may prevent or minimize the effects of a genetic 
disease we suggest that a diseased fetus has the right to op- 
timal therapy. This will often necessitate screening of the 
parents . 

102 



John A. Osmundsen thinks that screening should be rou- 
tine and comprehensive: Knowledge about genetic disorders 
can be used to help reduce suffering; ease the economic cost 
of institutional care and the indirect costs of the loss of 
income of a retarded child; help scientists to determine the 
precise health needs of a society and to allocate resources 
for them; and help families in improving the quality of their 
lives. He adds "the bottom line in practically all instances 
where such analyses have been made — for both the general popu- 
lation and the high risk 'target' populations — is that screen- 
ing saves money, as well as despair, pain, and suffering. The 
estimated cost of a malformed child is $250,000. According to 
figures from the late 1950 's there are about 250,000 defective 
births, annually in the United States alone — about 6% of all 
live births, and 80% of those due wholly or partly to genetic 
factors. Think about it." 

Osmundsen dissents strongly from Paul Ramsey's notion 
that mass screening is unethical because, as he sees Ramsey's 
position, it "might abort a few perfect fetuses by mistake." 
He retorts that Ramsey ignores almost completely the person of 

primary concern: "The defective patient with preventable 

7. 
genetic disease. What about him? Osmundsen is arguing 

against Ramsey in the course of a broader attack on the Report 

from the Research Group on Ethical, Social, and Legal Issues in 

Genetic Counseling and Genetic Engineerin g of the Institute of 

Society, Ethics and the Life Sciences, of which Ramsey was a 

member. Osmundsen seized on the report's major statement: 

103 



"There is currently no public health justification for man- 
datory screening for the prevention of genetic disease. The 
conditions being tested for in screening programs are neither 
contagious, nor for the most part, susceptible to treatment at 
present." He claims such a statement gives the institute the 
credibility of the Flat Earth Society. He cites the treatments 
that are available, and those that are being developed, as well 
as the benefits to society that accrue from the systematic 
abortion of identified uncurables. 

Marc Lappe , the program director of the research group, 
responds in the succeeding pages of the journal, saying basic- 
ally that Osmundsen misses the point of his citation and the 
intent of the whole report. It proscribes mandatory screening 
without denying the benefits that accompany risks of voluntary 
screening. When taken up voluntarily, the risks of screening 
become personal hazards by personal choice rather than by 

o 

legislative fiat. A summary of the report follows: 

--Screening programs should have specific goals, such as 
the detection of a specific disorder, or the compilation of 
disease distribution for a specific study. The purpose of the 
programs should be to inform couples about the nature of exist- 
ing alternati ,es and potential therapies. Non-therapeutic re- 
search should be linked to therapeutic counseling; whatever in- 
formation a study might discover that could be of use to indiv- 
idual couples or persons must be made available to them. 

104 



--Screening programs designed to reduce the frequency of 
carriers are unacceptable: "Virtually everyone carries a 
small number of deleterious or lethal recessive genes, and to 
reduce the frequency of a particular recessive gene to near 
the level maintained by recurrent mutation, most or all per- 
sons heterozygous for that gene would have either to refrain 
from procreation entirely or to monitor all their off-spring 
in utero and abort not only afflicted homozygote fetuses but 
also the larger number of heterozygote carriers of the gene" 
(p. 243) . 

--Screening programs should be well planned, with quality 
review boards to assess the protocols. Programmers should take 
care to elicit community support for their screening; there 
should be equal access to the procedure for all who wished to 
be screened. 

--Screening should have no strings attached: "As a general 
principle, we strongly urge that no screening program have pol- 
icies that would in any way impose constraints on childbearing 
by individuals of any specific genetic constitution, or would 
stigmatize couples who, with full knowledge of the genetic risks, 
still desire children of their own" (p. 245) . Genetic diseases 
are to be clearly distinguished from contagious diseases which 
menace public health. "The conditions being tested for in a 
screening program are neither 'contagious 1 nor, for the most 
part, susceptible to treatment at present" (p. 245) . 

--Screening should be voluntary. "We seriously question 

105 



the rationale of screening preschool minors or preadolescents 
for sickle-cell disease or trait since there is a substantial 
danger of stigmatization and little medical value in detect- 
ing the carrier state at this age" (p. 246) . 

— All the results of a screening should be given to the 
persons screened, no matter how complicated. Counseling should 
be made available for those found heterozygotes or homozygotes. 
"As a general rule, counseling should be non-directive, with an 
emphasis on informing the client and not making decisions for 
him" (p. 242) . Under no circumstances should screening be con- 
strued as tacit acceptance of therapy or abortion. 

--Researchers should protect screening information from 
being distributed irresponsibly. "... Misuse or misinterpre- 
tation must be seen as one of the principle (sic) potentially 
deleterious consequences of screening programs" (p. 248). Care 
should be taken to protect participants against stigmatiza- 
tion which could arise from making knowledge of a person's 
carrier status public in any way. Young children should not 
be recommended to refrain from physical activity because of 
carrying the sickle-cell trait; life-insurance coverage should 
not be denied adult trait carriers. 

SCREENING FOR HUNTINGTON'S CHOREA: A SPECIAL CASE 

Screening for Huntington's Chorea creates a particularly 
poignant dilemma. Here the presently healthy seeming individ- 
uals who undergo the test might be found to carry the latent 
form of the disease itself, not merely the recessive gene, and 

106 



may discover themselves doomed to suffer its hideous effects. 
Most of those screened have already seen a parent suffer from 
it; 50 percent of their children can also be expected to in- 
herit the same fate; the test will let them know for certain 
into which division they fall. One writer responds "It is not 
unreasonable to withhold the use of a test of this sort until 

we have something tangible to offer those who give a positive 

9 
result." Willard Gaylin takes a more moderate view. Man- 
datory screening is out of the question but: "The availability 
of such procedures should be widely and actively publicized. 
The usefulness of a medical procedure depends on its utiliza- 
tion, not its potential. To perfect a procedure and to keep 
this from public awareness because one assumes that the patient 
populations may not be able to tolerate the choice offered is a 
paternalistic arrogation of a power and an exercise in hypocrisy 
no longer acceptable." ' Gaylin puts these remarks in the con- 
text of saying that the techniques of modern science--genetic 
counseling and screening among them--should be judged by their 
possible benefits rather than their possible abuse. 



107 



Footnotes 



1. See Frederick Ausubel, Jon Beckwith, and Kaaren Janseen, 
"The Politics of Genetic Engineering: Who Decides Who's 
Defective?" Psychology Today (June 1974) . 

2. Marc Lappe and Richard Roblin, "Newborn Genetic Screening 
as a Concept in Health Care Delivery, "Ethical, Social 

and Legal Dimensions of Screening for Human Genetic Disease , 
vol. 10, no. 6 (1974) , p. 4/ 

3. Marc Lappe, "Moral Obligations and the Fallacies of 'Genetic 
Control,'" Theological Studies 33 (September 1972): 411-27. 

4. Paul Ramsey, "Screening: An Ethicist's View," in Ethical Issues 
in Human Genetics , ed. Bruce Hilton et al . (New York-London: 
Plenum Press, 1973), p. 151. 

5. The New England Journal of Medicine 287 (1972) : 204-5. 

6. John A. Osmundsen, "We Are All Mutants--Preventive Genetic 
Medicine: A Growing Clinical Field Troubled by a Confusion 

of Ethicists," Medical Dimensions (February 1973), pp. 26-27. 

7. Ibid. , p. 28. 

8. Pages cited refer to the text of the report as contained in 
Amitai Etzioni, Genetic Fix (New York: Macmillan Co., 1973), 

pp. 240-9; first published in The New England Journal of Medicine 
286 (25 May 1972) : 1129-32. 

9. D.L. Stevens, "Tests for Huntington's Chorea," The New England 
Journal of Medicine 285, (1971): 413-14. 

10. Willard Gaylin, "Genetic Screening: The Ethics of Knowing," 
The New England Journal of Medicine 286 (1972): 1362. 



108 



THE THREAT OF HEMOPHILIA 
By: Sissela Bok 

Ruth Mason must first decide whether to attempt to learn 

if she is a carrier of hemophilia. In the past, before such 
knowledge was possible, there could be no parental respon- 
sibility for any suffering on the part of afflicted children. 
But to avoid seeking information now is to shirk such a re- 
sponsibility, and severe recriminations within the family might 
well ensue. Consider the analogy of a mother planning a trip 
with a child into a region where the air in some states af- 
fects 25 percent of all children with permanent symptoms re- 
sembling those of hemophilia. If the information concerning 
the state where she wishes to go is easily available, what 
would we say about the mother's decision to refuse to find out 
whether there are such risks for her child? 

As a first step, then, Ruth Mason should find out whether 
she is likely to be a carrier. If she is, agonizing questions 
will arise testing her very sense of herself as a woman and as 
a mother, and her deepest beliefs concerning responsibility for 
unborn children. How can she feel in advance the suffering to 
which she might expose a child, or measure her own ability to 
deal with it? How can she evaluate the help from community and 
federal programs, and gauge their continued availability in a 
world of rapid shifts of policy and growing scarcity of re- 
sources? How can she weigh the very natural urge to be the 
biological mother of her children against that, equally natural, 
of wishing to give her children the healthiest possible start 

109 






in life? 

If Ruth Mason learns that she is a carrier while she is 
still not pregnant , she has three different kinds of options: 

(1) The first is to forego pregnancy, either through 
contraception or through voluntary sterilization. It does not 
present the ethical problems of the latter two. She can then 
either remain childless (as more and more women are choosing 
to do) or seek to adopt children. She will thus avoid the 
dilemma of whether to consider aborting male fetuses and won't 
expose daughters to being carriers in turn. 

(2) The second choice is to become pregnant with the in- 
tention of undergoing amniocentesis and aborting the fetus if 
it should be male. I would find a planned policy of this kind, 
continued until the desired family size is reached, more diffi- 
cult to justify ethically. This is because abortion is not a 
last resort here (even for those who want to bring up child- 
ren) , since the alternative of adoption does exist. In ad- 
dition, since abortion after amniocentesis takes place later 
in the pregnancy than most (in the latter half of the second 
trimester) , the procedure is more problematic for both the 
mother and the physician. And the fact that there is a 50 per- 
cent possibility that the abortus will be free from hemophilia 
should cause hesitation. If, on the other hand, a technique 
is developed where affected male fetuses can be detected early 
in pregnancy, these last two difficulties would vanish. 

(3) The third alternative which is, in my opinion, the 

110 






least defensible, is to decide in favor of becoming pregnant 
and giving birth, thus exposing one's baby to a substantial 
risk of suffering from hemophilia for life. If reluctance to 
have an abortion is thought of as a reason for such a choice, 
it must be remembered that adoption likewise avoids abortion, 
without therefore exposing children to risks of this magni- 
tude. 

I find the first alternative preferable. If, however, 
Ruth Mason does not learn that she is a carrier until after 
she is already pregnant , her choices are more restricted. There 
is now no longer a chance of avoiding a risk to the fetus--a 
25 percent risk of hemophilia, a 50 percent risk of abortion. 
The religious views of some parents may lead them to reject 
amniocentesis followed by abortion of a male fetus, even un- 
der these conditions. I would be inclined to make the choice 
to have the amniocentesis and possible abortion out of a con- 
cern not to bring into the world a child afflicted for life. 

Whatever choice parents make, it is crucial that they 
not be subjected to coercion in this matter, either to abort 
or to carry the baby to birth. 



Ill 



And by: Marc Lappe 

Societal "cost-estimates" for many genetic diseases, where 
the affected individual's potential as a human being is essen- 
tially unimpaired, are inherently suspect. There are statis- 
tically calculable "costs" for every prospective person, ir- 
respective of what is known about his or her genotype. While 
it might be morally wrong to knowingly bring a truly defective 
child into the world--where the parents cannot afford to give 
it the amenities of human existence unaided by society--in a 
pregnancy at risk for hemophilia one can neither "know" with 
certainty that the male fetus is hemophilic, nor know the 
true "cost" of dealing with the defect. Moreover, hemophilia 
is a highly heterogeneous disease. Only slightly more than 
half of all hemophiliacs require the constant (i.e., once every 
other day) and expensive prophylactic treatment to avoid spon- 
taneous bleeding episodes. With new technologies, hemophilic 
boys could likely be given the promise of avoiding the joint 
disabilities which previously made hemophilia crippling. 

Because the currently available tests for detection of 
carrier females and affected fetuses allow only a statistical 
estimate of the chance that a fetus is a prospective hemo- 
philiac, Ruth Mason could only avoid all risk of having a 
child with hemophilia by deciding to abort all male fetuses-- 
irrespective of the test's outcome. (Recall that the test 
may miss one in five carriers) . Here there is an extra moral 
weight to the decision to abort, since on the average, one or 
more normal male fetuses would have be to sacrificed to avoid 
the prospect of the birth of one with hemophilia. Neverthe- 

112 



less, the Masons might justify the decision to avoid the 
birth of hemophilic children by citing the psychological bur- 
den to themselves, and the possibility of bringing into the 
world a life whose existence would be fraught with suffering. 
But like some moral reasoning, these arguments are weakened 
by the inherent uncertainty of future events. 

The truly difficult question is if the Masons could mor- 
ally proceed with a pregnancy where there was a chance of 
having a hemophilic child. I think they could. Indeed, were 
she to believe that the possible ambiguities of a carrier test 
would aggravate the psychological burden of the pregnancy, Ruth 
Mason might justifiably even refuse the carrier test. To re- 
fuse, she should be able to justify her presumptive right to 
conceive a child where there was a substantial risk of having 
an infant who would require special and perhaps expensive care 
on a lifetime basis. 

To do this, I believe that Ruth Mason would need to ex- 
amine some or all of the following factors: (1) her valuation 
of human life; (2) her psychological ability to nurture a child 
who wil necessarily experience some suffering, both physical 
and psychological; (3) her family's resources—emotional , 
psychological and monetary—to care for this child; (4) the 
possibility that her own or her husband's expectations in hav- 
ing male children are incompatible with the life style dictated 
by hemophilia; (5) her recognition that such a child may him- 
self have deep psychological problems from overprotection af- 
forded by well-meaning others. 

113 



To my mind, a final test for this couple is whether or 
not they can give the prospective hemophilic child an assur- 
ance of independent existence, even where risks of his safety 
are still apparent. If they cannot, then perhaps they ought 
to consider those options which avoid his birth. They might 
well decide that sterilization is the only moral course open 
to them. Or, wishing to avoid the anxiety, costs and possible 
guilt of an "at-risk" pregnancy, they could adopt a child, es- 
pecially if they consider abortion morally unacceptable. 

But assuming they have weighed all the factors, and could 
accept the risk of a "worst" outcome, I think the Masons could 
go ahead and have a child. I know I would. 




114 



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Doonesbury 



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116 



TRANSITION 
From Session Two To Session Three 
SUGGESTED SCRIPTURE: 

Romans 12:1-13 
FOCUSING QUESTIONS: 

1. How does public support of biological research and tech- 
nology relate to "conformity to this world" and to being 
"transformed by the renewal of your mind, that you may 
prove what is the will of God, what is good and acceptable 
and perfect"? 

2. Paul speaks of a variety of gifts in the body of Christ. 
What changes to this list would you make for our time? 
How does your list address the need for engagement and di- 
alogue among persons of differing perspectives and compe- 
tencies who are searching for greater health and wholeness? 

3. Some scholars have noted the ambiguous road that must be 
traveled in seeking to realize greater goods. In the 
words of theologian, John B. Cobb, Jr.: ". . . there is a 
correlation among the following dimensions of experience: 
(1) the capacity for intrinsic good; (2) the capacity for 
intrinsic evil; (3) the capacity for instrumental good; (4) 
the capacity for instrumental evil; (5) the power of self- 
determination. The correlation among these dimensions of 
experience is positive, meaning that if any one of them in- 
creases, the others also proportionately increase." (Pro- 



117 



cess Theology , p. 71) . 

Given this observation, what suggestions do you have for 
ways to bring greater possibilities for good to bear upon 
real life situations? 

In Session Three, "Surgery Before Birth," we shall delve into 
what the quest for potential benefits entails. 



118 



Session 3 

Surgery Before Birth 



SURGERY BEFORE BIRTH 

During recent years, new methods, or technologies, have 
been perfected for monitoring fetal development and detecting 
problems which might preclude the birth of a normal, healthy- 
infant. Ultrasound (or sonography) allows for the viewing of 
fetal organs on a monitor to determine their position, size, 
function, and relative stage of development. This procedure 
is considered to be non-invasive. Amniocentesis is a procedure 
by which a sample of amniotic fluid is removed from the womb 
of a pregnant woman after the fifteenth week of gestation. This 
fluid is used in the laboratory for culturing cells which would 
reveal the presence or absence of chromosomal defects or other 
genetic problems. Another device is a fetoscope, an instrument 
that can be inserted into the uterus so that the fetus can be 
viewed directly. A fetoscope is like a periscope. While the 
new technologies promise many benefits for accurate diagnosis 
and new possibilities for treatment, many are not without risk 
and therefore both benefits and risks must be considered in 
their use. 

Along with these diagnostic tools new options for correc- 
tive therapy or management of the fetus have also been developed, 
and this development continues. Surgery on the fetus, or pre- 
natal surgery, is now a reality for correcting certain develop- 
mental problems or defects before birth. This session will 
focus on cases which illustrate these new possibilities and the 
ethical questions which they raise. 

121 



It is suggested that discussion begin with consideration 
of the questions related to the Bible reading provided at the 
conclusion of the previous chapter. Participants may also have 
articles or news clippings to share, as well as other comments 
and questions needing attention. 

Our consideration of fetal surgery begins with a hypo- 
thetical situation. Participants are asked to read through the 
situation and discuss what they think they would do. It will 
help to focus on why they decide as they do and how they arrived 
at their decision. 

Four cases are presented in this chapter with accompanying 
questions for discussion. Choose the cases most appropriate to 
your needs and the time available for their use. The background 
articles dealing with managing the fetus with a correctable 
genetic problem and the ethical issues around the fetus as a 
patient will help to understand the present "state of the art" 
and the areas of potential conflicts around fetal and/or pre- 
natal interests, risks and benefits, and social as well as 
economic priorities. 



122 



Session 3 



SURGERY BEFORE BIRTH 



PURPOSE 



The purpose of this session is to increase aware- 
ness of issues which accompany new capabilities 
for prenatal diagnosis of fetal problems and for 
therapeutic alternatives for treatment or manage- 
ment of specific fetal conditions and defects. 



GOALS : 



The session is designed to (1) increase under- 
standing of the possibilities of new diagnostic 
and therapeutic techniques for fetal management, 
(2) increase understanding concerning risks, 
benefits, and uncertainties of these advances in 
medicine, (3) identify the ethical considerations 
involved and (4) engage participants in discuss- 
ion of particular cases. 



COMPONENTS 



Prayer 

Bible reading discussion 

Articles in the news — questions, comments 

A Hypothetical Situation 

Four Cases: 

(1) Hydrocephalus 

(2) Collapsed Lungs 

(3) More than Hydrocephalus 

(4) Urinary-tract Blockage 
Background readings 



Transition 



123 



A HYPOTHETICAL SITUATION 

After discussion of the following situation in a small 
group, participants might wish to structure a role play around 
it to see whether ideas expressed in the abstract change under 
the span of a more realistic experience. 

You are twenty (20) weeks pregnant. Ultrasound has re- 
sulted in a diagnostic evaluation indicating that your fetus 
has hydrocephalus. You are confronted with several choices: 

(a) terminate the pregnancy; 

(b) undergo corrective surgery (fetal shunt) in utero; 

(c) carry your fetus to term with the risk of almost 
certain problems — retardation, death — after birth. 

1. What information do you need for an informed choice? 
What would you then choose? 

2. As the husband of this person, which of the above choices 
do you support? 

3. What do you think your doctor would recommend? 

4. In what way, if any, is the decision you make related 
to your religious beliefs or ethical values? 



124 



4 Cases 



I HYDROCEPHALUS 
IT- COLLAPSED LUNGS 
JCII MORE THAN HYDROCEPHALUS 
IV URINARY-TRACT BLOCKAGE 




3 . 1 HYDROCEPHALUS 

Jeannette Percival, age 31, was six months pregnant when 
she was told that the fetus she was carrying had hydrocephalus. 
"It was such a grim prognosis. My first thought was to term- 
inate the pregnancy; my daughter, who is nearly 3, was born 
with heart problems. But no one would do an abortion at 29 
weeks." The Percivals 1 obstetrician offered them fetal surgery 
as an alternative to the dreadful certainty of a damaged child. 

The Percivals thought about fetal surgery and decided that 
"if something could be done in time, . . . we should take the 
opportunity to do it, even though we knew there were risks in- 
volved." The surgery was undertaken at 32 weeks. Mrs. Percival 
entered the hospital and was given a mild tranquilizer to sedate 
the active fetus. An obstetrician, a neurosurgeon, an ultra- 
sound specialist, and a certified nurse midwife participated. 
The ultrasound scanning sensor projected the image of the fetus 
on an ultrasound screen. The target was an area at the top of 
the skull, about two inches behind the eyes. 

The doctor pierced Mrs. Percival ■ s anesthetized abdomen 

and then her uterus with a hollow needle about eight inches 

long. The needle contained a plastic tube, called a prenatal 

brain shunt, through which the fetus's excess brain fluid would 

be drained. The tube was about five inches long and thinner 

than a strand of spaghetti; within it was a one-way plastic 

valve to prevent amniotic fluid from traveling back into the 

fetus's brain. 

126 



The needle was maneuvered close to the fetus, and then 
the neurosurgeon pushed the needle through the fetus's skull 
and into the enlarged ventricle. 

"I could feel it when they put the needle in his head," 
Mrs. Percival recalls. "I felt a gush of fluid and then a 
trickle; it was very warm." After the flow of brain fluid 
stopped, the next task was to place the catheter to leave just 
over half the tube inside the fetus's brain and allow the rest 
of it to extend from its head and drain into the amniotic fluid 

The entire procedure took just over half an hour. It 
cost $22,000 and required a two-week stay in the intensive care 
unit. 

Questions ; 

1. If the fetus can be treated, is it a patient? Is it a 
person? When is this status reached? 

2. How much risk — for the mother, for the fetus — is appro- 
priate? What is meant by risk? Is the risk justified 
even in a situation of success/failure, i.e., the pro- 
cedure is successful, but the newborn infant is retarded 
anyway? 

3. Should the court appoint a guardian for the fetus? Does 
society have any obligation to a fetus? 

4. Who pays for the procedure and the intensive care? 

5. If this procedure becomes an accepted standard of care, 

what would be the legal and moral implications of refusing 

surgery or choosing abortion? 

127 



3.2 COLLAPSED LUNGS 

Innovative fetal surgery places new and unusual demands 
upon physicians and raises difficult issues for physicians, 
patients and hospital review boards. The following case is an 
example of how physicians and a patient working together enable 
the successful application of new surgical treatment. 

The case is one involving intrauterine catheterization 
which requires the implantation of a tube that will be left in 
the fetus. This treatment involves a clear statement of risk 
that is carefully articulated by the physician and understood 
by the patient. The risks of this surgery include at least 
the following: 

(a) the mother or fetus might die or be inadvertently 
harmed from the surgery or post-operative problems; 

(b) bleeding or infection may necessitate induced labor 
and premature birth or cesarean delivery; 

(c) the fetus might have other undetected defects; 

(d) the surgery might not be successful in alleviating 
fluid buildup; and 

(e) even if successful, the results of the operation might 
not allow sufficient respiratory functioning for sur- 
vival after birth. 

Deborah Pinion, in her last month of pregnancy, was found 
to be carrying a fetus with two collapsed lungs and a huge 
accumulation of fluid in the chest. Following explanation of 
the intrauterine catheterization and after due consideration, 

128 



Deborah elected to accept the risks of this new surgical treat- 
ment. To determine whether the fluid had permanently impaired 
lung development, her obstetrician and geneticist inserted a 
needle into the fetus's chest and withdrew the excess fluid 
from the right lung. Dramatically, the fetus's lung expanded — 
proof that one lung, at least, had the potential to work once 
the baby was born. 

But two days later, ultrasound showed that the lung had 
collapsed again and the fluid buildup continued. Because Mrs. 
Pinion was already so far along in her pregnancy, she was sent 
home to wait until she went into labor. When she did, a few 
weeks later, she returned; and physicians again withdrew a large 
amount of fluid from the fetus's chest--this time just as the 
baby was about to descend into the birth canal. Within three 
hours, little Emily Pinion was born—screaming. 

Six hours after Emily's birth, the doctors inserted a tube 
into her left lung to help inflate it. One week later, the tube 
was removed and Emily went home with two functioning lungs. Ex- 
cept for a metabolic problem which caused the original fluid 
buildup in her chest and is being treated with a special infant 
formula, Emily is a healthy 6-month old. 

Questions : 

1. Although this case had a happy ending, it raises important 

ethical questions: Are the risks of this new surgical treat- 
ment clearly outweighed by the benefits? How much risk is 
appropriate? 

129 



2. Had the outcome been different, i.e., if there were other 
problems, or if the surgery had not worked, or if the 
mother had died, would your feelings about risking this 
surgery be different? 

3. How are we to decide which fetuses to treat and which not 
to treat? 

4. Who should bear the cost for innovative or experimental 
fetal surgery? 



130 



3. 3 MORE THAN HYDROCEPHALUS 

Frank and Jackie Hynes were the prospective parents of 
a 25-week old fetus with hydrocephalus. After two attempts 
at inserting a pre-natal shunt into the fetus's head, the 
medical team gave up. 

Mr. Hynes recalled, "That first procedure was a terrible 
time for me, sitting at the head of the operating table, hold- 
ing Jackie's hand. I just felt that everything had gone wrong 
for us. I didn't want to look at anyone: I felt drained. 
But I wanted them to keep trying. I just wanted to feel that 
everything that was medically possible to save our baby had 
been done. " 

The following week, when it was clear the fetus's head 
was growing still larger, the Hyneses urged the doctors to 
try one more time. The doctors wanted to try a simple, straight 
four-inch catheter without the valve used in the Denver Shunt 
(the type of pre-natal shunt used earlier) and the parents gave 
their fervent consent. The team tried again, placed the ca- 
theter successfully, and fluid drained on the first try. 

"Everyone was real pleased," Mrs. Hynes said. "The next 
morning, when I went in for an ultrasound, the baby's head 
looked as though you had taken a balloon, filled it with air, 
and then deflated it." 

But the ultrasound showed another problem: the fetus had 
a cleft lip, which could indicate still other anomalies that 
could not be seen on ultrasound. As it turned out, that was 

131 



the case. Mark Hynes was born with a facial cleft running 
from his lip to right eye. And, the cleft in turn may have 
been the sign of a major midline brain malformation. The 
doctors believe that Mark's brain stem was probably malformed, 
which caused all his vital functions--respiration, metabolism, 
heart rate — to go awry. When he was 5 weeks old, Mark began 
going into convulsions, and he died of cardiac arrest. 

Questions ; 

1. What do you suppose were the feelings that Jackie and Frank 
Hynes had following this experience? 

2. Hydrocephalus is often a sign of other problems. Should 
prenatal surgery be attempted only when hydrocephaly is an 
isolated defect? 

3. What do you consider to be the ethical concerns in deciding 
this issue? 



132 



3.4 URINARY-TRACT BLOCKAGE 

Doctors cut into the uterus of a woman midway through 
pregnancy, partially removed her 21 week-old fetus from the 
womb and operated on it (while it was still attached to the 
umbilical cord) to bypass a urinary-tract blockage. Both mother 
and fetus were anesthetized with general anesthesia. 

After the operation, in which a hole was made to vent fe- 
tal urine into the amniotic fluid above the obstruction, the 
surgeons returned the fetus to the womb, replaced the amniotic 
fluid with a saline solution (the fetus had not been producing 
any on its own), sewed up the uterus and the mother's abdomen, 
and allowed the pregnancy to continue to term. Premature labor, 
the greatest risk of this surgery, was prevented by the admin- 
istration of powerful antilabor drugs both before and after the 
operation. 

Because the pregnancy continued to term, the physicians 
say they proved the feasibility of performing surgery outside 
the womb. But, sadly, this operation was too late to save the 
child. Twelve hours after birth, the baby died. As a direct 
result of the early lack of amniotic fluid, which in turn was a 
direct result of the urinary-tract obstruction, the lungs had 
failed to grow. Even though the condition had been diagnosed 
early in the mother's pregnancy, enough damage had already been 
done that the most extraordinary medical heroics were still in 
vain. 

The physicians have commented that experience in managing 

133 



15 cases of this sort suggests that the lack of adequate 
aminotic fluid is the most reliable indication of severe im- 
pairment. 

The ability to treat a few fetal disorders gives new im- 
portance to prenatal diagnosis and raises complex ethical 
questions about risks and benefits and about the rights of the 
mother and fetus as patients . 

Questions : 

1. With high risk and a high mortality rate, how can this kind 
of surgery be justified? 

2. Fetal surgery often falls into an ethical gray zone. How 
can society best support individuals who must make decisions 
in this area that have such uncertain results? 



134 



THE FETUS AS PATIENT : ETHICAL ISSUES 

By: John C. Fletcher 

Harrison and others, elsewhere in this issue of The 

Journal (p. 774) , point to a growing number of treatable con- 
genital defects in the fetus. By my count there are 33 op- 
portunities for treatment, mainly after induced or cesarean 
delivery. The authors cite seven opportunities for in utero 
treatment. Techniques of sonography, fetoscopy, amniocentesis, 
amniography, and fluid collection in the fetus are used in pre- 
natal diagnosis of the defect. Treatments vary from an in- 
direct mode through the mother to direct manipulation of the 
fetus, including surgery. The authors write that it "seems 
that the fetus with a treatable birth defect is on the thres- 
hold of becoming a patient." 

What are the "complex ethical issues" raised by fetal 
therapy to which the authors refer? At first glance these 
issues will not be apparent because the facts reported here 
will be "good news" to most physicians and the public. I, too, 
rejoice in alternatives to abortion for congenital defects, 
especially when the alternatives are based on a rational ap- 
proach to treatment. Many have waited long for prenatal diag- 
nosis to be accompanied by therapeutic plans . Given enough 
support and research, the small number of opportunities for 
fetal therapy will multiply. 

There are at least four ethical issues that arise around 
fetal therapy. The first, mentioned by the authors, concerns 
painful choices between conflicts of interests and values in 

135 



the clinical situation. These conflicts will be between the 
perceived interests of a fetus with a correctable defect and 
the stated interests of parents, especially the mother, who 
must give consent for fetal therapy to begin. Many of the 
treatable defects discernible by prenatal diagnosis are found 
at the period of borderline viability. The present standard 
of neonatology, subject to dispute but nevertheless practiced, 
is to give the high-risk infant the benefit of the doubt when 
the infant's interests are challenged by competing or con- 
flicting considerations. This standard will doubtless be ex- 
tended to the treatable fetus, even at the borderline of via- 
bility. The present standard of abortion, similarly subject 
to dispute but nevertheless practiced, is to give the mother's 
and family's interests precedence when these are in conflict 
with the nonviable fetus. Fetal therapy will present intense 
moral problems in borderline cases of this sort or in rarer 
cases where the treatment is more risky to the mother than to 
the fetus. Improvements in fetal therapy will establish a 
stronger ground to protect the affected fetus' right to life, 
which will collide with the well-established ground for the 
parental right to a choice about abortion. Most of the time, 
parents who desire the child in the first place would be will- 
ing to accept reasonable risks to improve the child's chances 
for health. The hardest cases will be innovative therapy with 
ambiguous results when data on outcomes are unavailable, es- 
pecially when the mother's body is the site of treatment. 

136 



In my view, it would be unwise now in fetal therapy to 
close the issue between fetal interests and parental inter- 
ests in favor of the fetus. As long as the fetus is not sep- 
arate from the mother, choices about treatment ought to be made 
only with her informed consent. The interests of the fetus can 
be represented to the parents and their physician, if need be, 
by a second physician willing to take on the role of advocate. 
My view has room for admitting that we have much to learn about 
these types of conflicts and their outcomes without serving up 
premature answers. For the present, the most helpful attitude 
in the midst of such conflicts is to maximize choices, learn as 
much as possible, and stay within the existing legal guidelines 
on abortion. 

The second ethical issue concerns the apparent inconsis- 
tency of encouraging fetal therapy on the one hand and respect- 
ing parental choice about abortion on the other. Should the 
moral status of the wanted fetus with a treatable defect outweigh 
that of an unwanted fetus with the same treatable defect? Is 
it not contradictory for physicians to speak of the fetus as 
"patient" when one of the stipulations for that role is that 
physicians would not under any circumstances abandon such an 
individual? In my view, the fetus with a treatable defect could 
not be fully considered a patient until separate from the mother, 
unless one took the position of being willing to coerce the 
mother to let the pregnancy go to term. However, physicians who 
present options to parents about fetal therapy are well advised 
to point out their moral bind. They are not literally able to 

137 



regard the nonviable and nonseparate fetus as patient, yet they 
need the support of the parents in approximating that goal. 
Most parents will assume such a helping role. 

The third ethical issue concerns the proper conditions 
for learning about the fetus as an object of therapy. Long- 
term success in fetal therapy is dependent on opportunities 
for both diagnostically and therapeutically designed research. 
Enthusiasm for fetal therapy should be tempered by the fact 
that only the first small steps have been taken. Ethical 
guidelines for fetal research supported by federal funds now 
limit most research with the fetus in utero to two types: (1) 
research designed to meet the health needs of that particular 
fetus and (2) research with minimal risk to develop "important 
biomedical knowledge" that cannot be obtained except by these 
means. Local institutional review boards have authority to 
approve research of these two types. A third type of research 
involving "more than minimal risk" also requires review at the 
national level by an Ethical Advisory Board (EAB) of the De- 
partment of Health and Human Services . A procedural rather 
than ethical problem has prevented consideration of protocols 
of the third type because the EAB ceased functioning last year. 
Steps are being taken to assemble a proper departmental body 
to replace the EAB. Given the widely divergent ethical views 
on the moral status of the fetus that are held in the society, 
a national review process is appropriate. Given this improve- 
ment, it appears that these guidelines have functioned ade- 
quately since 1975 to provide an ethical basis for the kind of 

138 



') 



fetal research most relevant to fetal therapy. 

The final issue is the question of the social and econo- 
mic priority that should be assigned to investigations of the 
risks and benefits of fetal therapy. In my view that priority 
should be high. The great appeal of fetal therapy is the 
promise of earliest feasible treatment to correct diseases 
that result in a lifetime of physical suffering and economic 
burdens. The economic considerations should be secondary to 
the opportunity to relieve or prevent suffering, but the 
economic question should not be passed over lightly. From 
here it appears that the most difficult moral dilemma in medi- 
cal ethics in the United States in the near future will be the 
influence of cost considerations on the quality of treatment in 
borderline cases. How much weight is it ethically acceptable 
to give to the burden of costs in the management of life- 
threatening disease or terminal illness? For many years the 
economic and technical base of the society was apparently strong 
enough not to have to give definitive answers to such questions. 
Since that situation no longer prevails and scarcer economic 
resources will have to be carefully reallocated, these ethical 
questions require clear answers. Fetal therapy, in fact, may 
represent one example where treatment is indeed prevention. 
Early treatment could reduce some of the lifetime costs of 
disease and thereby contribute to a future state of affairs 
when economic considerations would not be the overriding reason 
for medical decisions. 

139 



1. Code of Federal Regulations Title 45 , subpart 46.209. 
Office of Protection from Research Risks. National Institutes 
of Health. Department of Health and Human Services, 1978. 




140 



MANAGEMENT OF THE FETUS 

WITH A CORRECTABLE CONGENITAL DEFECT 

Michael R. Harrison, M.D.; 
Mitchell S. Golbus , M.D. ; 
Roy A. Filly, M.D. 

The human fetus has for centuries remained a medical 
recluse in an opaque womb. Now fetal anatomy, normal and 
abnormal, can be accurately delineated by ultrasonography, a 
noninvasive technique that appears safe for fetus and mother. 
Some fetal malformations with a known pattern of inheritance 
may be specifically sought. However, many are identified ser- 
endipitously during obstetric sonography, sometimes because the 
obstetric conditions that lead to sonography are associated 
with underlying fetal malformations. For example, oligo- 
hydramnios is associated with fetal urinary tract obstruction 
and polyhydramnios with fetal upper gastrointestinal (GI) 
tract obstruction. 

Until recently, the only question raised by the prenatal 
diagnosis of a fetal malformation was whether to abort the 
fetus, but other therapeutic alternatives are becoming avail- 
able, such as changing the timing of delivery, changing the 
mode of delivery, and even treatment before birth. Since peri- 
natal management may be altered, prenatal diagnosis now assumes 
practical clinical importance. 

In this report, we outline the diagnostic and therapeutic 
alternatives for management of specific fetal malformations that 
can be recognized in utero. Since experience in fetal manage- 

141 



ment is limited, our views must be tentative; they are in- 
tended as the basis for discussion, investigation, and refine- 
ment. 

Malformations Usually Managed by Selective Abortion 

When serious malformations incompatible with normal post- 
natal life are diagnosed early enough, the decision usually is 
to terminate the pregnancy. When these malformations are rec- 
ognized too late for safe abortion, the family can be counseled 
and appropriate postnatal management arranged. The Table lists 
examples of severe anatomic malformations that are considered 
indications for selective abortion. Some of these malformations 
are associated with chromosomal defects that can be diagnosed 
by culture of amniotic fluid cells. An example is omphalocele 
associated with trisomy 18. These anatomic abnormalities join 
a long list of inherited chromosomal and metabolic disorders 
that can be diagnosed in utero and usually lead to selective 
abortion. 

Malformations That May Not Affect Prenatal Management 

Most correctable malformations that can be diagnosed in 
utero are best managed by appropriate medical and surgical 
therapy after delivery at term. The term infant is a better 
anesthetic and surgical risk than the preterm infant. Exam- 
ples of such malformations that have been diagnosed in utero 
are given in the Table. Although this list is not exhaustive, 
the majority of neonatal surgical disorders fall into this 



142 



category. Knowing that a fetus has one of these anomalies 
may not alter the timing or mode of delivery, but it does al- 
low preparation for appropriate prenatal and postnatal care. 
Therapy for hydramnios and premature labor may be desirable to 
allow the fetus to remain in utero as long as possible. The 
delivery can be planned so that appropriate personnel (neo- 
natologist, anesthesiologist, pediatric surgeon) are available. 
When the neonate will require highly specialized services, 
transporting the fetus in situ (maternal transport) may be 
preferable to postnatal transport of the fragile newborn. 

Malformations That Can Influence the Timing of Delivery 

Early delivery may be indicated for certain fetal anomal- 
ies that require correction as soon as possible after diagnosis 
(Table). In each of these cases, the risk of premature delivery 
must be weighed against the risk of continued gestation. This 
approach has already proved beneficial in managing the fetus 
with hydrops fetalis and intrauterine growth retardation. Re- 
cent advances in stimulating fetal surfactant production with 
corticosteroids, and in ventilating small babies, have greatly 
improved the outcome for premature infants with respiratory dis- 
tress syndrome. 

The rationale for early correction is unique to each anom- 
aly, but the principle remains the same: continued gestation 
would have a progressive ill effect on the fetus. In some cases, 
the function of a specific organ system is compromised by the 
lesion and will continue to deteriorate until the lesion is cor- 

143 



rected. In congenital hydronephrosis, unrelieved urinary- 
tract obstruction results in progressive deterioration of 
renal function. Preterm delivery for early decompression of 
the urinary tract should reverse the renal maldevelopment at 
the earliest possible time and thus maximize subsequent renal 
growth and development. In obstructive hydrocephalus, high 
intraventricular pressure compresses the developing brain. 
Early delivery for ventricular decompression should maximize 
the opportunity for subsequent brain development and may avoid 
the difficult obstetric problem of delivering a baby with an 
abnormally large head. 

In some malformations, the progressive ill effects on the 
fetus result directly from being in utero. In the amniotic 
band complex, a fetal part is compressed or strangulated by 
herniation through a defect in the fetal membranes, resulting 
in amputation or deformity. This simple mechanical restriction 
to growth and development should be relieved at the earliest 
possible time to prevent further deformity. In ruptured om- 
phalocele or gastroschisis , the bowel exposed to amniotic 
fluid becomes coated with a thick, fibrous inflammatory peel 
that may hinder repair and delay resumption of function. Early 
delivery should minimize this damage by shortening the time the 
bowel is exposed to the amniotic fluid. Anomalies associated 
with progressive organ ischemia should be corrected as soon as 
possible. Volvulus associated with intestinal malrotation or 
meconium ileus may lead to intestinal gangrene, perforation, 
and meconium peritonitis. Early delivery for correction of 

144 



this type of bowel lesion would be aimed at minimizing the 
amount of bowel lost to the ischemic process. 

Malformations That Can Influence the Mode of Delivery 

Elective cesarean delivery rather than a trial at vaginal 
delivery may be indicated for the fetal malformations listed in 
the Table in most cases because the malformation would cause 
dystocia. Another indication for elective cesarean delivery is 
a malformation requiring immediate surgical correction best per- 
formed in a sterile environment. Examples are a ruptured ompha- 
locele or an uncovered meningomyelocele. In this circumstance, 
the baby can be resuscitated in an adjacent sterile operating 
room and undergo immediate surgical correction. Finally, 
cesarean delivery may be required if preterm delivery of an 
affected fetus is elected but labor is inadequate or the fetus 
does not tolerate labor as determined by fetal monitoring. 

Malformations That May Require Intervention In Utero 

Some fetal deficiency states may be alleviated by treat- 
ment before birth (Table). In respiratory distress syndrome, 
glucocorticoids given to the mother increase deficient fetal 
pulmonary surfactant and alleviate the disease. Fetal RBC 
deficiency secondary to isoimmunization-induced hemolysis can 
be treated by transfusing RBCs into the fetal peritoneal 
cavity. We have treated severe hydrops by administering 
digitalis and diuretics along with the RBCs. A fetus with 
vitamin B responsive methylmalonic acidemia has been treated 
in utero by giving massive doses of B, 2 to the mother. Recently 

145 

*B 
12 



we have treated a fetus with biotin-dependent multiple car- 
boxylase deficiency by giving the mother pharmacologic doses 
of biotin during the last half of pregnancy. Medications and 
nutrients injected into the amniotic fluid are swallowed and 
absorbed by the fetus. Intra-amniotic thyroid hormone can be 
used to treat congenital hypothyroidism and goiter and to help 
mature the fetal lung. The intrauterine growth-retarded fetus 
might be fed orally by instilling nutrients into the amniotic 
fluid. 

Correcting an anatomic malformation in utero will be more 
difficult than providing a missing substrate, hormone, or medi- 
cation to the fetus. The only anatomic malformations that 
warrant consideration are those that interfere with fetal organ 
development and that, if alleviated, would allow normal fetal 
development to proceed (Table) . 

Congenital hydronephrosis secondary to urethral obstruction 
is an excellent example of an anatomically simple lesion that 
has devastating consequences on the developing fetus that may 
be prevented by correction before birth. Fetal hydronephrosis 
is being recognized with increasing frequency because fluid- 
filled masses are particularly easy to detect by sonogram and 
because associated oligohydramnios is a common obstetric indi- 
cation for sonography. We have reviewed the management of 13 
fetuses with urinary tract malformations and developed an ap- 
proach based on the predictable pathophysiological consequences 
of obstruction on renal and pulmonary development. We have dis- 
cussed the rationale for early decompression of the obstructed 

146 



fetal urinary tract and the techniques of transurethral or 
suprapubic drainage of urine from the bladder into the amnio- 
tic fluid. We are testing the efficacy and feasibility of 
these techniques in fetal lambs and monkeys. 

Another fetal malformation that may require correction 
before birth is congenital diaphragmatic hernia. Although 
this simple defect is easily correctable in the neonatal 
period by removing the herniated viscera from the chest and 
closing the defect in the diaphragm, 50% to 80% of these infants 
die of pulmonary insufficiency because the lung compressed by 
the herniated viscera is hypoplastic. To allow the lung to 
grow and develop enough to support life at birth, the pulmon- 
ary compression must be relieved before birth. We have demon- 
strated in fetal lambs that compression of the fetal lung dur- 
ing the last trimester results in fetal pulmonary hypoplasia 
and that removal of the compressing lesion allows the lung to 
grow and develop sufficiently to reverse the fatal pulmonary 
hypoplasia and allow survival at birth. Congenital diaphrag- 
matic hernia can be diagnosed in utero, and a technique success- 
ful for surgical correction in utero has been developed experi- 
mentally. 

Another simple obstructive lesion with developmental con- 
sequences is obstructive hydrocephalus secondary to stenosis of 
the aqueduct of Sylvius. Here, obstruction to the flow of CSF 
produces back pressure that dilates the ventricles, compresses 
the developing brain, and eventually destroys neurological func- 
tion. Decompressing the ventricles may reverse the adverse ef- 

147 



fects of high-pressure hydrocephalus and allow development to 
proceed normally. The obstructed CSF could be repeatedly as- 
pirated or shunted into the amniotic fluid by means of a small 
one-way Silastic catheter placed by either surgical or sono- 
graphically guided percutaneous techniques. 

Comment 

The potential for correction of some fetal malformations 
gives new importance to the rapidly developing field of pre- 
natal diagnosis. Many fetal malformations are detectable in 
utero. The prenatal diagnosis of many of these malformations 
will not alter management; some cannot be corrected, and most 
of the correctable lesions are best treated after normal term 
delivery. However, a few are amenable to treatment before term. 
Since their recognition will influence management of the pregnancy, 
prenatal diagnosis of these disorders assumes practical clini- 
cal importance. 

Therapeutic decisions will require a thorough evaluation 
of the fetus beyond accurate anatomic definition of the mal- 
formation being considered for therapy. Since it is known that 
malformations often occur as part of a syndrome, a search for 
associated abnormalities is necessary to avoid delivering a 
neonate with one corrected anomaly but other unrecognized dis- 
abling or lethal abnormalities. Real-time sonographic evalua- 
tion may yield important information on fetal breathing, fetal 
movements, and fetal vital functions. Amniocentesis allows 
culture of amniotic fluid cells for detection of chromosomal 

148 



defects and inherited metabolic abnormalities, evaluation of 
fetal pulmonary maturity from lecithinsphingomyelin analysis, 
and detection and quantitation of fetal hemolysis. Fetoscopy 
allows direct fetal visualization, fetal skin biopsy, and fetal 
blood sampling for diagnosis of hemoglobinopathies and other 
hematologic diseases. Amniography affords further definition 
of fetal anatomy, including the fetal GI tract. Finally, 
fluid collections in the fetus (including blood, urine, ascites, 
CSF) can be aspirated under real-time sonographic guidance for 
both diagnosis and therapy. The technique in our experience 
has proved safe and relatively simple. 

Fetal therapy raises complex medical and ethical issues. 
The first problem is defining the benefits and risks of fetal 
diagnosis and treatment. For the fetus, the risk of the pro- 
cedure is weighed against the possibility of correction or 
amelioration of the malformation. The benefit to be derived 
from correction depends on the severity of the malformation and 
its predictable consequences on survival and quality of life. 
Assessing the risks and benefits for the mother is more diffi- 
cult. Most fetal malformations do not directly threaten the 
mother's health, yet she must bear some risk from the procedure. 
She may choose to accept the risk to aid her unborn baby and in- 
crease his prospects for a normal life and to alleviate her own 
burden in carrying and preparing to raise a child with a severe 
malformation . 

The risks involved in fetal diagnosis and treatment are 
generally greater for the fetus than the mother and vary greatly 

149 



according to the magnitude and invasiveness of the procedure. 
Sonography carries no known risk. Amniography poses an in- 
creased risk of radiation exposure. Puncture of the amnio- 
tic cavity poses a small risk of fetal injury or loss. With 
appropriate equipment and expertise, fetoscopy, fetal blood 
sampling, and puncture of the fetal abdomen for intrauterine 
transfusion can be performed with acceptable risk. We have 
experience with sonographically guided aspiration of fetal 
ascites, urine, and CSF, but insufficient experience to judge 
risk adequately. The risk to fetus and mother of more extensive 
manipulation, such as placement of shunt catheters using sono- 
graphically guided percutaneous techniques or direct surgical 
exposure of the fetus by hysterotomy, is not known. Surgical 
exposure of the human fetus, outside of cesarean section, is 
limited to catheterization of fetal vessels for exchange trans- 
fusion. The greatest known risk of fetal manipulation is in- 
duction of labor and premature delivery. Although this remains 
the principal deterrent to fetal intervention, the pharmacologic 
control of uterine contractility with betamimetic drugs and 
prostaglandin synthetase inhibitors is improving. The role of 
prostaglandins in the physiological control of the uterus and 
the effect of agents that inhibit prostaglandin synthesis on 
mother and fetus are areas of active investigation. 

In considering the ethical problems raised by fetal therapy, 
one clearly positive aspect is that prenatal diagnosis of a fet- 
al malformation may now lead to treatment rather than abortion. 
However, the possibility of diagnosing and treating fetal dis- 

150 






orders raises important questions about the rights of the 
mother and fetus as patients. Who makes decisions for the fe- 
tus? How can the risk of intervention be weighed against the 
burden of the malformation itself? For example, a mother car- 
rying a fetus with urethral obstruction and severe bilateral 
hydronephrosis must weigh the risk of correction against not 
only the risk of neonatal death or severe disability from renal 
or pulmonary failure, but also the emotional and financial bur- 
den of prolonged, arduous, expensive, and sometimes unrewarding 
treatment of chronic renal failure. The lifelong emotional and 
financial burden of any given malformation on the person and his 
family should be weighed against the risk of fetal intervention 
undertaken to ameliorate this burden. 

The pathophysiological arguments for fetal intervention 
are compelling, but extreme caution must be exercised in under- 
taking any new fetal manipulation. Extensive experience with 
fetal surgery in laboratory animals may not be readily trans- 
latable to the human. Survival" after fetal surgery is easy to 
achieve in sheep but much more difficult in primates, where 
premature labor is often difficult to control. Certainly, re- 
pair of human fetal malformations should not be undertaken un- 
til competence and a high degree of success are achieved in a 
primate model. Recent advances in anesthetic and surgical 
technique and pharmacologic control of labor may soon make this 
feasible. 

Our ability to diagnose fetal birth defects has achieved 
considerable sophistication. Treatment of several fetal di- 

151 



seases has proved feasible, and treatment of more complicated 
lesions will undoubtedly expand as techniques for fetal inter- 
vention improve. It seems likely that the fetus with a treat- 
able birth defect is on the threshold of becoming a patient. 

Albert R. Jonsen, Ph.D. reviewed the manuscript and provided 
helpful suggestions. 

REFERENCES 



1. Filly RA, Callen PW: Normal fetal anatomy as 
visualized with gray scale ultrasonography, in 
Sanders RD , James AE (eds) : Ultrasonography in 
Obstetrics and Gynecology , ed 2. New York, 
Century-Appleton-Crofts, 1980. 

2. Hobbins JC , Grannum PAT, Berkowitz RL , et al: 
Ultrasound in the diagnosis of congenital 
anomalies. Am J Obstet Gynecol 1979; 134:331- 
345. 

3. Touloukian R J , Hobbins JC: Maternal ultra- 
sonography in the antenatal diagnosis of surgi- 
cally correctable fetal abnormalities. J. Pediatr 
Surg 1980; 15:373-377. 

4. Garrett W J , Kossoff G: Selection of patients by 
ultrasonic echography for fetal and immediate 
neonatal surgery. Aust Paediatr J 1976; 12: 
313-317. 

5. Golbus MS, Loughman WD, Epstein CJ et al: Pre- 
natal genetic diagnosis in 3,000 amniocenteses. 
N Engl J Med 1979; 300:157-163. 

6. Ballard PL, Ballard RA: Corticosteroids and 
respiratory distress syndrome: Status 1979. 
Pediatrics 1979; 63:163-164. 



152 



7. Thompson T, Reynolds J: the results of intensive 
care therapy for neonates: I. Overall neonatal 
mortality rates. II. Neonatal mortality rates and 
long-term prognosis for low birth weight neonates. 
J. Perinat Med 1977;5:59-75. 

8. Harrison MR, Filly RA, Parer JT, et al : Manage- 
ment of the fetus with a urinary tract malforma- 
tion. JAMA, to be published. 

9. Epstein M: Hydrocephalus, in Ravitch MM, Welch 
KJ, Benson CD, et al: Pediatric Surgery , ed 3. 
Chicago, Year Book Medical Publishers Inc. 1979. 

10. Higginbottom MC, Jones KL, Hall BD, et al : The 
amniotic bank disruption complex. Timing of 
amniotic rupture and variable spectra of conse- 
quent defects. J. Pediatr 1979;95:544-549. 

11. Harrison MR, Filly RA, Stanger P, et al : Prenatal 
diagnosis and management of omphylocele and 
ectopia cordis. J Pediatr Surg , to be published. 

12. Queenan JT: Intrauterine transfusion - a compara- 
tive study. Am J Obstet Gynecol 1969;104:397-409. 

13. Ampola MG, Mahoney MJ, Nakamura E, et al : Prenatal 
therapy of a patient with vitamin-Bl2- responsive 
methylmalonic acidemia. N Eng J Med 1975; 293: 313- 
317. 

14. Weiner S. Scharf JI, Bolognese RJ, et al : 
Antenatal diagnosis and treatment of a fetal 
goiter. J Reprod Med 1980;24:39-42. 

15. Masiach S. Barkai G, Sack J, et al : The effect 
of intraamniotic thyroxine administration on 
fetal lung maturity in man. J Perinat Med 1979; 
7:161-170. 

16. Renaud R. Vincendon G f Boog G, et al : Injections 
intra-amniotiques d'acides amines dans le cas de 
malnutrition foetale. J Gynecol Obstet Biol Reprod 
1972;1:321-241. 

17. Harrison MR, Bjordal RI , Langmark F, et al; Congenital 
diaphramatic hernia: The hidden mortality. J Pediatr 
Surg 1978;13:227-230. 

18. Harrison MR, Jester JA, Ross NA: Correction of 
congenital diaphramatic hernia in utero; I. The 



153 






model: Intrathoracic balloon produces fatal 
pulmonary hypoplasia. Surgery 1980;88:174-182. 

19. Harrison MR, Bressack MA, Churg AM, et al : 
Correction of congenital diaphramatic hernia 

in utero: II. Simulated correction permits fetal 
lung growth with survival at birth. Surgery 19 80; 
88:260-268. 

20. Aguero 0, Zigbelboim I: Intrauterine diagnosis of 
fetal congenital diaphragmatic hernia by amnio- 
graphy. Am J Obstet Gynecol 1970;107:971-973. 

21. Harrison MR, Ross NA, deLorimier AA: Correction 
of congenital diaphramatic hernia in utero: III 
Development of a successful surgical technique. 
J Pediatr Surg , to be published. 

22. Zahn v, Jensen M, Walther JU: The practical 
importance of fetoscopy. J Perinat Med 1979; 
7:117-124. 

23. Alter BP : Prenatal diagnosis of hemoglobinopathies 
and other hematologic diseases. J Pediatr 1979; 
95:501-503. 

24. Golbus MS: The antenatal detection of genetic 
disorders, in Class R (ed) : Office Gynecology , ed 2. 
Baltimore, Williams & Wilkins Co, to be published. 

25. Asensio SH: Surgical treatment of erythroblastosis 
fetalis, in Adamson K (ed) : Diagnosis and Treatment 
of Fetal Disorders, New York, Springer-Verlag, 1969, 
pp 264-271. 

26. Adamson K: Fetal surgery. N Engl J Med 1966; 275: 
204-206. 

27. Hemminki E,Starfield B: Prevention and treatment 
of premature labour by drugs: Review of controlled 
clinical trials. Br J Obstet Gynecol 1978;85:411-417 

28. Novy MH, Liggins GC : Role of prostaglandins, prosto- 
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of the uterus and in parturition. Perinatology 1980; 
4:45-66. 



154 



MANAGEMENT OF FETAL MALFORMATIONS 

Managed by Selective Abortion 

Anencephaly, porencephaly, encephalocele, and giant 
hydrocephalus 

Severe anomalies associated with chromosomal abnormalities, 
i.e. trisomy 13, trisomy 18 

Renal ageresis or bilateral polycystic kidney disease 

Inherited chromosomal, metabolic, and hematologic abnorm- 
alities, e.g., hemoglobinopathies, Tay-Sachs ' disease 

Detectable in Utero but Best Corrected After Delivery at Term 

Esophageal, duodenal, jejunoileal, and anorectal atresias 

Meconium ileus (cystic fibrosis) 

Enteric cysts and duplications 

Small intact omphalocele 

Small intact meningocele, myelomeningocele, and spina 
bifida 

Unilateral multicystic dysplastic kidney 

Craniofacial, extremity, and chest wall deformities 

Cystic trygroma 

Small sacrococcygeal teratoma 

Ovarian cysts 

May Require Induced Preterm Delivery for Early Correction 
Ex Utero 

Obstructive hydronephrosis 
Obstructive hydrocephalus 
Amniotic band malformation complex 
Gastroschisis or ruptured omphalocele 

155 



Intestinal ischemia-necrosis secondary to such conditions 
as volvulus and meconium ileus 

Hydrops fetalis 

Intrauterine growth retardation 

May Require Cesarean Delivery 

Conjoined twins 

Giant omphalocele, ruptured omphalocele/gastrochisis 

Large hydrocephalus 

Large sacrococcygeal teratoma 

Large cystic hygroma 

Large or ruptured meningomyelocete 

Malformations requiring preterm delivery in the presence 
of inadequate labor or fetal distress 

May Require Treatment In Utero 

Deficiency states that may be alleviated 

Deficient pulmonary surfactant (pulmonary immaturity) 

Anemia — erythroblastosis and hydrops 

Hypothyroidism and goiter 

Multiple carboxylase deficiency (biotin-dependent) 

Nutritional deficiency and intrauterine growth retardation 

Anatomic lesions that interfere with development 

Bilateral hydronephrosis (urethral obstruction) 

Diaphragmatic hernia 

Obstructive hydrocephalus 



156 



TRANSITION 
From Session Three to Session Four 

SUGGESTED SCRIPTURE: 

I Corinthians 3:18-23 

FOCUSING QUESTIONS: 

1. Is there a sense in which the new knowledge and technology 
of biology is "the wisdom of the world" and "folly to God?" 

2. Is this new knowledge and technology a sign of the Spirit 
of God dwelling in all people? 

SUGGESTED SCRIPTURE: 
Mark 10:17-18 

FOCUSING QUESTION: 

1. Jesus rejects the temptation to let himself be idolized by 
those who perceive the good in him. Yet divine good needs 
to be expressed and can be expressed only through secular 
existence . 

How is it possible to respect any good, in whatever medium 
that it is expressed, and still avoid elevating the par- 
ticular medium of expression as being the good in and of 
itself? 

In Session Four, "Fertility Problems And Birth Defects: 
Opportunities and Dilemmas," we shall engage the tensions 
involved in recognition of advances for possible value and 
in recognition of the value (s) of particular advances. 

157 



Session 4 

Fertility Pi obi ems andBhth Defects: 
Oppoitunities and Dilemmas 



FERTILITY PROBLEMS AND BIRTH DEFECTS: 
OPPORTUNITIES AND DILEMMAS 

Severe birth defects and problems associated with infer- 
tility are of major concern for society. These are often con- 
genital problems, defects which become evident during fetal 
development and birth, rather than genetic problems, defects 
inherent in the genes which may be transmitted to succeeding 
generations. Birth defects of both kinds comprise an impor- 
tant link in this curriculum between the areas of screening for 
genetic disorders and the new possibilities of corrective surgery 
dealt with in the previous two sessions, and the issue of direct- 
ing new developments in biology which we consider in this and 
the following sessions. How should our research efforts be 
directed? What controls are needed? What are the economic 
factors to be considered? What are the limits in correcting 
birth defects? Who will benefit and what benefits will accrue? 

Two of the case studies in this session concern birth de- 
fects, and two cases are about problems of fertility and con- 
ception by artificial means. 

Again, it may be helpful to begin this session with a dis- 
cussion of the Bible readings assigned earlier, and any comments 
or concerns that may be carried over from the previous session. 
Participants may have news articles or other pertinent informa- 
tion to share, as well. 

The convenor of this session will want to remind everyone 
of the projects discussed in the introduction for consideration 
at the next meeting. These were: (1) gathering data from bio- 

160 



technology companies about their research; (2) identifying sperm 
and embryo banks and their policies regarding donors and pros- 
pective recipients; (3) collecting articles about private cor- 
porations and their involvements in this field; (4) checking 
with a local hospital or research center about their research 
policies, consent procedures, and use of human subjects. 

Since this is the fourth session in the series, partici- 
pants should feel more knowledgable about the issues and the 
procedures for discussion. Questions following the cases are 
designed to promote lively and productive conversation of the 
ethical issues. The background readings in this session are 
helpful for those desiring more detailed information than is 
presented in the cases themselves. In addition, the articles 
in Part II provide further reading for those interested in re- 
lated subjects. 

At the conclusion of this session, attention should be di- 
rected to the Bible readings and reflection questions in prep- 
aration for the next meeting. 



161 



PURPOSE 



FERTILITY PROBLEMS AND BIRTH DEFECTS: 
OPPORTUNITIES AND DILEMMAS 
The purpose of this session is to explore how 
various alternatives or interventions affect de- 
cisions for treatment, uses of particular pro- 
cedures and techniques, and issues of public 
policy. 



GOALS 



The session is designed to (1) increase aware- 
ness of the relationship between personal re- 
sponsibilities and public policy in issues of 
treatment alternatives and (2) have participants 
identify ethical issues within cases which raise 
these dilemmas. 



COMPONENTS : Prayer 



Bible reading discussion 

News Items--questions , comments 

Reminder of next session projects 

Four Cases: 

(1) New Conception, New Issues 

(2) The Del Zio Saga 

(3) The Birth of Missy B 

(4) Dilemma in Danville 
Background Readings 

Transition 



162 



4 Cases 



I NEW CONCEPTION, NEW ISSUES 
II THE DEL ZIO SAGA 
III THE BIRTH OF MISSY B 
IV DILEMMA IN DANVILLE 




4.1 NEW CONCEPTION, NEW ISSUES 

Suzanne Rubin, age 32, was one of the first persons born 
as a result of AID (artificial insemination by donor) . Shortly 
after her mother's death a year ago, she learned from the man 
she had assumed was her biological father about her conception 
by artificial insemination. 

Suzanne now wants to find the sperm donor and demand that 
he acknowledge her as his offspring. Her intent is to raise 
both medical and ethical issues about using sperm donors to 
father children and suppress the circumstances of their con- 
ception. 

She knows some facts to aid the search: the name of the 
physician who cared for her mother; the donors were medical 
students from the University of Southern California School of 
Medicine; the approximate date when she was conceived; a list 
of all USC medical students at that time. She also knows that 
the donor was Jewish. Her list contains fifty five Jewish names 
Geneticists have said that because she is a tall, blue-eyed 
redhead and her mother had dark hair and eyes, her biological 
father almost certainly is blue-eyed with medium coloring and 
red hair or with redheads in his family. New methods of blood 
typing could make his identification almost certain. 

No one knows how many Americans owe their existence to AID, 
but it's estimated there are at least 10,000 AID births every 
year, perhaps many more. According to Suzanne, "Most of them 
don't know it. It is absolutely outrageous. They are robbed of 

164 



half of their genetic and biological history." 

Suzanne Rubin raises issues that touch an increasing num- 
ber of lives, with the sharp increase in the number of babies 
born as a result not only of AID, test tube conceptions, and 
surrogate mothering, but also of extra marital liaisons. 

Questions : 

1. What reasons can you think of to motivate Suzanne Rubin's 
search? What role does religious tradition play? 

2. Do children have the right to know their biological identity? 
Give reasons for your answer. Why, e.g. do adopted child- 
ren often search for their biological parents? 

3. Do infertile men and women have rights to bear children by 
non-traditional means of conception? 

4. What non-traditional means of conception would you support 
for infertile women and/or men desiring children? 

5. Is childbearing a private matter for parents only? Does 
society have an interest in regulating procreation? 

6. Do religious or ethical values discriminate between child- 
ren conceived naturally and children conceived in non- 
traditional ways? 



165 



4.2 THE DEL ZIP SAGA 
(When desires and obligations conflict) 

Doris and John Del Zio were married in 1968; he was 
twenty-five years older than she. Both had children by pre- 
vious marriages. They tried determinedly but without success 
to have a child. Eventually she and her husband were referred 
to William J. Sweeney, a specialist in infertility and gyne- 
cologic surgery at Cornell Medical School and its affiliate, 
New York Hospital. Her problem was blocked fallopian tubes 
preventing the union of sperm and egg. Dr. Sweeney operated 
successfully; she became pregnant but miscarried. Her doctor 
operated twice more, but to no avail. 

In 19 72, Dr. Sweeney told Doris and John about in vitro 
fertilization and proposed this as a possible procedure. He 
informed them that there had been, to that point, no success 
with humans, though the procedure had been done often in animals, 
and that there was a risk of birth defects, though later on the 
witness stand Dr. Sweeney said he believed that risk to be less 
than in normal pregnancy. Ovarian tissue and the fluid from 
the follicles of the woman's ovaries would be removed by a sur- 
gical procedure known as laparotomy. A sterile culture of the 
fluid and ovarian matter, presumably including egg cells to be 
fertilized, would then be combined with semen from the woman's 
husband and incubated. The culture was to remain for four days 
so that if fertilization took place, the cell divisions could 
occur until a blastocyst emerged, after which it would be im- 

166 



planted in the uterus in the hope that the pregnancy would pro- 
ceed normally. The Del Zios accepted the risks and chose to 
try this procedure. 

Dr. Sweeney called in Dr. Landruin Shettles, assistant 
professor of clinical obstetrics and gynecology at the Columbia 
College of Physicians and Surgeons and an attending physician 
at Presbyterian Hospital. Dr. Shettles had been doing research 
on egg physiology and in vitro fertilization since before World 
War II. He also had achieved a certain amount of notoriety 
among his colleagues, largely through his writing association 
with David Rorvik, author of a book claiming to document a case 
of human cloning. 

Doris Del Zio entered New York Hospital on September 11, 
1973; the resident wrote on her chart "admitted for removal of 
ovum and subsequent uterine implant." The following day, Dr. 
Sweeney performed the surgical procedure. He placed the fluid 
in a double test tube which John Del Zio took uptown to Pres- 
byterian Hospital to give to Dr. Shettles, who in turn gave John 
a container and told him to produce some semen and to bring it 
to him. Dr. Shettles then combined both fluids and placed the 
tube in an incubator. 

He mentioned the plan to a colleague, who told another, 
who got in touch with Raymond Vande Wiele, chairman of Colum- 
bia's department of obstetrics and gynecology and chief of 
Presbyterian Hospital's obstetrics and gynecology service. Dr. 
Vande Wiele conferred with his superiors, and they told him to 
halt the procedure. He asked that the test tube be brought to 

167 



him and confronted Dr. Shettles with it. 

Their conversation was tape-recorded. According to the 
transcript, Dr. Vande Wiele upbraided Dr. Shettles for pro- 
ceeding without getting clearance from Columbia's human ex- 
perimentation committees, and Dr. Shettles responded that 
since a patient of Dr. Sweeney's was involved, and the implant 
was to be done at New York Hospital, he had not thought Colum- 
bia's approval was required. Dr. Shettles further reported 
that Dr. Sweeney had secured approval from the appropriate 
sources at his institution. Dr. Sweeney had not done this al- 
though he had mentioned it to a couple of relevant people. Dr. 
Sweeney later testified that, as far as he was concerned, it 
was not an experiment, it was simply a surgical procedure, and 
therefore he did not see why approval was required. 

Doris Del Zio found out that night that the procedure had 
been stopped, when Dr. Shettles called her to apologize. When 
Dr. Sweeney saw her the next morning, he later reported, she 
was "overcome, distraught, totally distraught." She kept ask- 
ing him why a man she didn't even know would take away her only 
chance to have a baby. 

Since that time, Doris has had a number of gynecological 
problems requiring treatment, and in some instances, hospitali- 
zation, though she has not been pregnant. She and her husband 
testified that she lost interest in her home, her social life, 
and sex. She saw a psychiatrist suggested by her attorney for 
a year; he testified that she was still suffering from a reactive 
depression brought on by the events of September, 1973. 

168 



The Del Zios filed suit against Dr. Vande Wiele, Colum- 
bia University, and Presbyterian Hospital in August, 1974; the 
fact that the trial occurred simultaneously with the announce- 
ment of the first British baby by in vitro fertilization was 
apparently fortuitous. Judge Charles Stewart instructed the 
six-person jury to ignore the news from abroad about Louise 
Brown's birth. The Del Zios alleged in the suit that Dr. Vande 
Wiele had intentionally inflicted distress, and that he showed 
a reckless disregard for the emotional consequences of his ac- 
tions. In the absence of an emergency (the implant was not 
scheduled to take place for another couple of days) , he should 
have consulted with Drs. Shettles and Sweeney before taking 
any action. Furthermore, he had no right to terminate a volun- 
tary procedure undertaken by a doctor at another institution. 

After a day of deliberation, the jury agreed and awarded 
Doris Del Zio $50,000, $12,500 each from the university and 
the hospital and $25,000 from Dr. Vande Wiele. For the loss of 
his wife's services, John Del Zio was allotted a dollar from 
each defendant. On a second charge, namely, conversion of 
property, Dr. Vande Wiele was acquitted, apparently on grounds 
that he came by the property--the test tube and its contents — 
unintentionally . 

Despite the decision of the jury at issue is the conflict 
between Doris Del Zio's passionate desire to bear a baby and 
Dr. Vande Wiele 's obligation to honor prior agreements his in- 
stitution had with the federal government. The plaintiffs argued 
that at the time there was no ban on in vitro fertilization, 

169 



which was true, although there were and are so many moral ques- 
tions about it that the government is not funding any such re- 
search pending a full-scale review. In fact, Columbia, along 
with most other major institutions, had filed assurances that 
it would observe a three-stage review process before proceeding 
with any research on human subjects. One of Dr. Vande Wiele's 
arguments was that, since the Del Zio case had not gone through 
that process, it was in violation of that agreement (which 
covered all experimental work, no matter where its support came 
from). The 60 percent of the medical school's funding that 
comes from federal sources was therefore in jeopardy. 

Comments following the verdict indicate some real issues 
remain unresolved over what to do when aspirations and respon- 
sibilities conflict among different parties. Said Dr. Vande 
Wiele of the verdict: "It says that researchers and physicians 
are no longer accountable and are not required to submit their 
work to review by their colleagues and the public." Donald F. 
Tapley, dean of the Columbia medical school, said the verdict 
"has in effect sanctioned clandestine, illicit and even dan- 
gerous experiments on human beings, experiments without cautions 
or controls." The Del Zios 1 lawyers, on the other hand, said 
the verdict would establish "a sort of bill of rights for 
patients in the future. The medical profession is now on notice 
that the rights of patients can no longer be disregarded under 
a plethora of petty regulations designed only to benefit hospi- 
tal politicians." 

170 



Questions ; 

1. What are the special interests that each party in this 
case has? How do they conflict? 

2. How would you weigh the different values claimed, repre- 
sented and served? 

3. What might you have done differently if you had been: 

Doris? 

John? 

Dr. Sweeney? 

Dr. Shettles? 

Dr. Vande Wiele? 

The Jury? 
(The group may want to role play this situation. In so 
doing, individuals might be encouraged to assume roles 
contrary to their particular point-of-view. ) 



171 



4. 3 THE BIRTH OF MISSY B 

Missy, the daughter of Mike and Sue B. , was born with 
spina bifida (meningomyelocele) , a defect which occurs ap- 
proximately once in every 500 live births. Spina bifida is 
an abnormal opening in the spine, and meningomyelocele is a 
condition in which portions of the spinal cord, as well as 
meninges and spinal fluid, have slipped out through the ab- 
normal opening and are enclosed in a sac which protrudes from 
the backbone. Until ten years ago, almost 80 percent of these 
infants were certain to die soon after birth. Today, surgical 
treatment is available to ameliorate the condition, and about 
75 percent now survive, although affected children all face a 
lifetime of illness, operations and varying degrees of dis- 
ability, including mental retardation. 

Soon after Missy's birth, a physician consulted with Mike 
B. , giving full details of the severity of the condition which, 
in her case, already included spastic paraplegia, incontinence 
of urine and feces, and club feet. He explained the necessary 
treatment, costs and prognosis, and urged that immediate surgery 
be performed to prevent further nerve damage. Without surgery, 
he said, Missy would probably contract meningitis which, if un- 
treated, would either lead to more severe handicaps or death. 
He explained that if Missy survived an operation, she would 
never be able to walk without the aid of braces and crutches, 
that she would have to undergo extensive physical therapy all 

her life, and that she had a 90 percent chance of developing 

172 



hydrocephalus ("water on the brain"). 

The parents understood the medical factors involved; they 
had a good income and comprehensive medical insurance. Their 
three-year-old daughter was healthy. Each had known families 
with abnormal children. 

Questions ; 

1. What are the implications of the alternatives for: 

(a) Mike and Sue B.? 

(b) The physician and medical team? 

(c) The newborn infant, Missy B.? 

2. What is the impact of possible choices on the three-year 
old daughter? 

3. What values emerge for consideration in the various choices 

one could make? 

************ 

Sue and Mike decided not to have Missy treated. After her 
discharge from the hospital, Sue returned daily to feed and hold 
her child. Both she and Mike spent much of their time caring 
for Missy in the hospital and became very attached to her. When 
at the age of two weeks Missy began to develop symptoms of men- 
ingitis, Mike and Sue reversed their decision and asked to have 
her treated. 

Surgical repair of the meningomyelocele was successful and 
Missy was discharged. When she was 4 months old low-grade hy- 
drocephalus developed and a shunt (tube) was inserted to drain 

173 



the cerebrospinal fluid from her brain. At age 6 months she 

was able to sit up with the aid of a special splint, and her 

personality was emerging, although it was too soon at that 

time to test her mental development. Mike and Sue seemed to 

have adjusted well to Missy and tried to treat her as much like 

a normal child as possible. 

************ 

Questions : 

4. What choices did Mike and Sue have when Missy was: 2 
weeks?; 4 months?; 6 months? Had Missy's medical con- 
dition worsened during the early stages of her life, could 
her parents have again decided against further treatment? 

5. Have the doctors and the parents acted in Missy's best in- 
terest? 



174 



4.4 DILEMMA IN DANVILLE 

The scene: the delivery room of a hospital in Danville, 
Illinois. The date: May 6, 1981. The mother had been in 
labor for seven hours. Because twins were expected, two doc- 
tors were in attendance — the family doctor and a local obste- 
trician. The first baby was born bruised and blue, with the 
cord wound around his head. "Ventilate," the anesthesiologist 
said. But the obstetrician, seeing that the mother had de- 
livered Siamese twins joined at the waist with three legs, 
quickly gave another order. The nurse heard him say, "Don't 
resuscitate, let's just cover the babies." The father, also a 
doctor, at his wife's side in the delivery room, seemed to 
agree. He moved his hands, palms outward, across his chest. 
"Enough," the gesture said. "No more." An order that the twins 
be given no food or water — "Do not feed in accordance with par- 
ents' wishes" — was written in the medical chart. The infants 
were taken to the newborn nursery to die. 

In the ordinary course of practice in many American hos- 
pitals the twins would have died in a few days. There would 
probably have been no funeral. The parents would go through 
the intense, painful process of grieving over the loss, perhaps 
trying in a year or two to have another child. In this case 
something different happened. The nurses on the ward became 
uncomfortable; at least one fed the babies several times. Com- 
plaints were made to the attending physician. On May 13, an 
anonymous telephone caller told the Illinois Department of 
Children and Family Services that Siamese twins at Lakeview 

175 



Medical Center in Danville were being neglected. A social 
worker investigated. On May 15 Family Services filed a pe- 
tition of neglect against the parents, asking that it be given 
custody of the children. After a hearing at which several 
nurses testified, the judge found the infants had been neglec- 
ted during the eight-day stay, and ordered that temporary cus- 
tody be given to Family Services. The twins- were moved to 
Children's Memorial Hospital in Chicago for evaluation and 
treatment. 

On June 11 the case took another unusual twist. The dis- 
trict attorney of Vermilion County, Illinois, filed criminal 
charges against the parents and the attending physician for 
conspiracy to commit murder and endangering the life and health 
of children. This was the first time that criminal charges had 
ever been filed against parents and doctors for withholding food 
or medical treatments from a newborn with major birth defects. 
On July 17 a preliminary hearing was held to ascertain whether 
there was probable cause that the defendants had committed the 
crime. At the hearing none of the nurses was willing or able 
to link the parents and physician directly with orders to with- 
hold food from the twins. Based on the lack of evidence, the 
judge found no probable cause and dismissed the charges. 

The Danville case is not over. The district attorney may 
seek to reinstate the charges by presenting the case to a grand- 
jury. Assignment of permanent custody, now temporarily, with 
the state, will also have to be decided. There are medical de- 
cisions to be made concerning surgical separation, treatment, 

176 



and care of the twins. Beyond these immediate problems, how- 
ever, loom several larger questions, for the Danville case 
and other recently publicized cases in Hartford and Miami have 
focused public attention once again on the difficult problem 
of when, if ever, nontreatment for the purpose of causing a 
defective child's death is appropriate. The Danville case, in 
particular, offers several lessons for parents, physicians, 
nurses, hospitals, and policy makers. 

Questions : 

1. An Opinion of the Judicial Council of the American Medical 
Association states: "The decision whether to treat a 
severely defective infant and exert maximal efforts to 
sustain life should be the choice of the parents." Yet, in 
the Danville Case a criminal complaint was directed at the 
physician and the parents. Some suggest that a third party 
should enunciate the best interests of the child as viewed 
from her/his perspective as part of the decision making pro- 
cess. Who bears responsibility for decisions about treat- 
ing a defective newborn? 

2. (a) If you had to make the decision in this case, what 

would you have done? 
(b) As a group, in the role of a Judicial Council, what 
would you do? Do you have to compromise or change 
your individual decision? 

3. What reasons can you give for the actions of: 

(a) the nurses? 

177 



(b) the Family Service? 

(c) the district attorney? 

4. Would you support a proposal that would withhold the 
issuing of birth certificates until 100 days after birth? 

5. Do you favor baptism and funerals for defective newborns 
with no chance of survival? 

6. What is the policy in your local hospital for treating 

or not treating defective newborns? What is the hospital's 
infant mortality rate? 



178 



MASS SCREENING FOR NEURAL TUBE DEFECTS 
By: Gina Bari Kolata 

A controversial sequence of prenatal tests for neural 
tube defects is on the verge of becoming standard obstetrical 
practice. The Food and Drug Administration (FDA) published in 
the Federal Register on November 7 a proposal for the marketing 
of test kits that would permit commerical laboratories to screen 
for the disorder. After allowing time for public comments, and 
after a public hearing on January 15, the agency will publish 
its final regulations. Alan Duncan of the FDA estimates that 
laboratories may market the test kits just two to four months 
later. 

The tests for neural tube defects are not new; they were 
developed by David J. H. Brock of Western General Hospital in 
Edinburgh and they have been successfully used in the United 
Kingdom since 1974. Brock reports that 700,000 pregnancies 
have been screened and that about 50 percent of all pregnant 
women in the U.K. are tested. The only exception is Ireland, 
where the tests are not offered because abortions are prohibited 
Ironically, the Irish have an astonishingly high incidence of 
neural tube defects — about 1 percent of all Irish babies are 
affected. 

In Brock's sequence of screening tests for neural tube de- 
fects, women are first given a blood test for alpha fetoprotein 
(AFP) when they are sixteen weeks pregnant. This protein pours 
out of the open spinal cords of fetuses with neural tube defects 

179 



and enters the maternal bloodstream. About fifty out of 1,000 
women will have positive tests. These fifty are then given a 
second blood test and about thirty will again have positive 
results. Those women are referred for sonograms, ultrasound- 
wave pictures that can detect conditions such as incorrect ges- 
tational dating, fetal death, or twins, which could lead to 
abnormally high AFP blood concentrations. Sonography will elim- 
inate about fifteen of the women. 

The remaining fifteen out of 1,000 are given amniocentesis 
to check the AFP concentrations in their amniotic fluid. One 
or two will have high AFP concentrations, indicating that they 
are carrying babies with neural tube defects. In addition, the 
U.K. has begun testing the amniotic fluid for acetylcholines- 
terase, a nerve enzyme present when fetuses have neural tube 
defects. The use of this additional test, according to Brock, 
virtually eliminates false positives, or incorrect labeling of 
healthy fetuses, a problem that plagued the early development 
of the technique. (There is, however, a small percentage of 
false negatives, that is, tests that fail to show affected fe- 
tuses . ) 

The U.K. spent little time worrying about ethical issues 
in mass screening programs. Brock explains, "We lack your 
capacity for agonizing over the issues. A lot of centers de- 
cided to give it (the screening program) a try and saw that it 
works. The ethical issues tend to wither away once a program 
begins." He points out that, in these times of fiscal austerity, 
the screening programs continue to be fully funded, which indi- 

180 



cates that couples in the U.K. place a high value on detecting 
neural tube defects. "The screening programs only got off the 
ground because the feeling is that the prognosis for a child 
with spina bifida is pretty gloomy , " Brock says. (Children with 
spina bifida have an opening in their spinal cord through which 
the nerve column protrudes. The other form of neural tube de- 
fects is anencephaly, in which the brain is absent or only rudi- 
mentary. (See box on page 9.) 

In the United States, however, there has been much hesi- 
tation about starting mass screening programs for neural tube 
defects. Previous efforts to introduce mass screening, for 
example, for sickle cell anemia, created serious ethical and 
political problems. Screening for neural tube defects also ra- 
ises a host of ethical issues that take on increased importance 
because of the very magnitude of the projected programs. Unlike 
screening for other defects, where particular risk factors can 
be identified, this program theoretically could involve all 
pregnant women. 

Although babies with anencephaly pose fewer ethical issues 
in terms of treatment because they die soon after birth, babies 
with open spina bifida, who frequently are paralyzed and men- 
tally retarded, present more of a problem. For example, in 1973, 
John Lorber, a physician at Sheffield Hospital in England, pub- 
lished a disturbing paper in the British Medical Journal explain- 
ing how he decided which babies with open spina bifida to treat 
and which to allow to die. Lorber or one of his associates would 
make recommendations to the parents of affected babies within 

181 



hours after the babies were born. All but one of thirty- 
seven couples accepted his decisions to treat or not to treat 
their babies. But many physicians and ethicists have criti- 
cized his criteria and his way of getting parental permission. 

Babies with spina bifida still are being denied medical 
treatment on the basis of doctors' guesses about the severity 
of their defects, even though it is becoming clear that there 
is always an uncertainty about any particular child's prog- 
nosis. John C. Fletcher, assistant for bioethics at the 
National Institutes of Health, says that open spina bifida 
babies who are left untreated because their physicians are 
sure their lesions are so serious that they will soon die, fre- 
quently live. He cites a study by Susan Feeting, Heather Tweed, 
and Jane Perrin of Wayne State University in which thirty-one out 
of seventy-five infants were selected for no treatment. Of that 
group 70 percent were still alive at eighteen months, and with- 
out the benefit of early treatment. On the other hand, James 
Maori of the State University of New York at Stony Brook, who 
screens Long Island women for neural tube defects in a pilot 
program, points out that some babies thought to have good prog- 
noses do poorly. "A small, innocuous-looking lesion can be 
devastating," he says. 



Abortion and Coercion 

Although ethical dilemmas about neural tube defects are 
not new, the ethical controversy over the prenatal screening 
program involves decisions about the worth of an affected child's 

182 



life before it is born. Women found to be carrying affected 
fetuses will be offered abortions. 

A key ethical issue is: will they have free choice? Many 
doctors believe it would be better if all children with neural 
tube defects were never born, and they are likely to communi- 
cate this attitude to patients, if all the tests seem to be 
positive. Carol Buchholz, who chairs the Spina Bifida Associa- 
tion of America, explains that physicians and parents often 
have quite different views of the value of life for spina 
bifida children. "I don't think physicians think of the child- 
ren as going to school, playing, having a normal life. They 
only see them as sick children." Yet, she says, "They are 
children first, disabled second." 

Stephen B. Parrish of Loyola University, who also is a 
parent of a child with spina bifida, says he knows a number of 
parents who have reared children with spina bifida and have 
learned to deal with this disability. These parents are eager 
to adopt other such children rather than see them aborted. 
Parrish and Buchholz urge that parents be told of the positive 
as well as the negative side of spina bifida so that they can 
make more informed decisions and so that children who are born 
with spina bifida will be respected and valued. 

Even if couples are told of the positive side of spina 
bifida, they may be under pressure to abort affected fetuses 
if society chooses not to aid in their support. The Center for 
Disease Control estimates that medical care for a spina bifida 
child's first twenty years costs $16,800, in 1977 dollars. In 

183 



contrast, medical care for a normal child costs $2,400. But, 
says LeRoy Walters, director of the Kennedy Institute of Eth- 
ics at Georgetown University, "It's a very tough problem" to 
decide whether society in fact owes anything to spina bifida 
children and their families. "Perhaps all that people have a 
right to do is to make their decision and not be interfered 
with," he speculates. 

Still another form of coercion may occur if some physi- 
cians refuse to give the screening tests to women who do not 
agree beforehand to abort affected fetuses. These physicians 
may reason that giving the tests to such women is a waste of 
resources. This has already happened to Buchholz. After her 
first child was born with spina bifida, she became pregnant 
again and asked her doctor to test her amniotic fluid for AFP. 
He asked her if she would abort if the test was positive. When 
she said that she didn't know what she would do, he refused her 
the test. She was very anxious throughout her pregnancy, she 
says, but she subsequently had a normal baby. 

No matter how subtle the coercion, however, most couples 
will probably choose to abort affected fetuses. Macri says 
that after testing 35,000 pregnancies in the last few years, he 
detected seventy fetuses with neural tube defects. He reports 
that he makes an enormous effort to show the positive side of 
spina bifida, yet only three of these seventy couples decided 
against abortion. Macri offers couples the opportunity to meet 
with members of the Spina Bifida Association of America and sug- 
gests that they may also wish to visit the New York University 

184 



Spina Bifida Study Group where they can see a variety of child- 
ren with the disorder. Macri cautions, however, that it is im- 
possible to estimate from his data how many American women may 
choose not to abort once screening becomes widely available. 

The abortion questions are of great concern because so 
many fetuses are affected. If only half of all fetuses with 
neural tube defects are detected and aborted, as many as 3,000 
pregnancies would be terminated each year. And a number of those 
fetuses would have had normal intelligence and minimal handi- 
caps if carried to term. 

It is not unusual, of course, for fetuses to be aborted 
when their prognoses are unclear. As Fletcher points out, 
couples sometimes choose to abort fetuses with sickle cell 
anemia, which ranges widely in severity. They also will fre- 
quently choose to abort fetuses exposed to rubella, even though 
only half of the exposed fetuses will be affected by the virus. 
But because the neural tube defects screening program involves 
so many women, what Fletcher calls "the risks of uncertainty 
about severity" are brought into sharp focus. 

Public Policy Issues 

In addition to the ethical questions about implicit pres- 
sure on couples to choose abortions, there are public policy 
questions that have ethical implications. For example, Natalie 
Abrams of New York University Medical Center imagines that a 
number of women will opt for abortions after two positive blood 
tests. Either they will claim they want to avoid any possible 

185 



chance of having a child with a neural tube defect or they will 
cite the data that their pregnancies are at high risk even if 
their fetuses do not have neural tube defects. Must physicians 
then provide these women with abortions? Abrams does not think 
so, but she does believe this will become an issue. 

Abrams also asks whether doctors must tell women when, by 
mistake, a normal fetus is aborted. She explains that it might 
be extremely difficult for a physician to tell a woman who had 
been trying to conceive for years that such a mistake was made. 
Yet in her opinion women have a right to this information, par- 
ticularly since those who already have one child with a neural 
tube defect run a 5 percent chance of having another. 

Another public policy question is whether all women should 
enjoy equal access to the programs. A number of researchers, 
including Macri, argue that they should, claiming that it would 
be unjust to offer the screening tests only to women who can 
afford them or to offer the blood tests alone in areas of the 
country where sonography and amniocentesis are not widely avail- 
able. Others, including Walters, disagree. Although he would 
like to see equality of access, he says, "There are many things 
poor people cannot afford. Why single out this test and make 
it conform to special standards? I don't think the program 
should be held hostage to that requirement (for equal access)." 

It is still an open question whether women should give in- 
formed consent at the time of the first blood test and, if so, 
whether the consent should be written or oral. Certainly, if 
they are told the purpose of the tests, they will become anxious 

186 



Is that anxiety balanced by their right to know? Obstetricians 
often do not tell pregnant women of other tests they perform, 
the outcome of which would lead the women to terminate their 
pregnancies. However, Macri and James Haddow of the Foundation 
for Blood Research in Scarborough, Maine, who operates a pilot 
screening program, inform women of the nature of the AFP blood 
tests and report no problems with this procedure. 

Despite these unresolved ethical issues, the screening 
program will soon begin — unless the FDA proposals become the 
subject of unusually intense and irreconcilable controversy. 
The agency's proposed regulations specify that quality control 
be maintained and that counseling, ultrasound, and amniocen- 
tesis be offered in areas where the blood tests are given. Some 
ethicists and physicians are relieved that, at last, the screen- 
ing programs will be widely available. "My main worry about de- 
laying is that babies are being born with these defects," says 
Fletcher. The long-term impact of the program is, however, 
unknown . 

The Condition and the Prognosis 

Neural tube birth defects are the most common in this 
country, affecting 6,000 babies each year, or about two out of 
every 1,000 Caucasian babies born. (The frequency is signifi- 
cantly lower in the black population.) The defects usually 
cause death or paralysis and mental retardation. No one knows 
why neural tube defects occur or how to prevent the birth of 
affected children, except by prenatal detection and abortion. 

187 



The defects are caused when the neural tube—which forms 
the brain, spinal cord, and spinal column — fails to close 
early in fetal development. About half the time, the tube 
remains open at the top and the babies are born with anencephaly, 
a condition in which the brain is absent or only rudimentary. 
These babies usually die soon after birth. The rest of the time, 
the opening is further down the neural tube and the babies are 
born with spina bifida, a condition in which a portion of the 
spinal cord protrudes through the unfused vertebrae. 

Twenty percent of children with spina bifida have "closed" 
spina bifida, that is, the protruding spinal cord is covered by 
skin. These children require surgery but their prognosis is 
good — they usually have few or no physical handicaps and are of 
normal intelligence. Eighty percent of the affected babies, 
however, are born with "open" spina bifida, in which the pro- 
truding section of the spinal cord is covered only by a membrane. 
Depending on the location and the size of the defect, these 
children usually have no bowel or bladder control; and they 
usually suffer some degree of paralysis, generally from the 
waist down. Two- thirds of them have an accompanying birth de- 
fect, a condition called hydrocephaly, which prevents fluid from 
draining from the brain. 

Babies with open spina bifida generally have a grim prog- 
nosis. Barbara Crandall of the UCLA Center of Health Statistics 
estimates that 90 percent are handicapped, 70 percent have hydro- 
cephaly, 50 percent die by age two, and 25 percent of the surviv- 
ors are mentally retarded. 

188 



A CHILD OF ARTIFICIAL INSEMINATION WONDERS 
By: Ivor and Sally Ogle Davis 

Los Angeles—Suzanne Rubin considers herself a victim of 
artificial insemination, and it has become her obsession. 

Her mother had just died, and her father called his then 
32-year-old daughter into his room. There, flanked by his 
psychiatrist, he told her: "I'm not your real father. Your 
mother was artificially inseminated by an unknown donor." 

Today, Rubin says, "I always knew there was something. 
I'm a tall, blue-eyed, freckle-faced redhead: My parents were 
short and dark. When I was a child, I was always kidded, 
"Where did you come from?" 

For the past two years Rubin has played detective for the 
purpose of answering that question. By a tortuous process of 
elimination, she found out her father was one of 55 Jewish medi- 
cal students at USC in the '50s. Geneticists at the university 
told her he would have had blue eyes and either red hair or 
relatives with red hair. That narrowed it down to 10. 

Rubin doesn't expect to like him much when and if she finds 
him. "What kind of man drops off his sperm and collects $25 for 
it and walks off with no thought of responsibility? I don't hate 
him, but I have a tough time saying that my father sold me for 
that amount . " 

She says she did succeed in tracking down the doctor who 
inseminated her mother. At first he refused to talk to her or 
return her calls; then he told her, "All medical records about 

189 



your heritage were destroyed 10 years ago." Says Rubin, "I 
don't believe him." 

She feels any person produced by artificial insemination 
should have the same rights that an adoptee hunting for his 
real mother is afforded. There's also a practical reason, she 
says: "I have a terrible medical history on my mother's side. 
On my father's side I'm a total blank. I have a 15-year-old 
daughter, and I want to find out if there are any hereditary 
medical problems that might affect us." 

Doctors and other authorities fear that Rubin's quest, if 
successful, could open a Pandora's box of legal and ethical 
problems. Secrecy, they insist, is vital if artificial insem- 
ination is utilized. Some states already have regulations that 
absolve donors of parental responsibility and designate the 
father of record as the legal father. In most cases, however, 
the issue has been left up in the air. Some of the possible 
complications are terrifying. 

For instance, commercial sperm banks use a few dozen don- 
ors to inseminate thousands of women. The possibilities for 
unwitting incest are therefore real. Cryobank organizers say 
they have consulted experts in probability to prevent such 
occurrences, but at best, all they can do is make it more 
unlikely. Time magazine reported not long ago that one marriage 
in New York was prevented at the last moment for precisely this 
reason. If kids today can sue their families for malpractice as 
parents, what's to prevent artificially inseminated offspring 
from suing their mothers for making a bad sperm choice? 

190 



A few states still consider children of artificial insem- 
ination to be illegitimate. Husbands have sued wives for 
"adultery" because they became pregnant by artificial insemin- 
ation. Separated, the husband requested visitation rights, 
the wife argued he had none — because he wasn't the child's 
real father. A New York court granted the visiting rights; 
then the mother and child moved to Oklahoma; where a court re- 
versed the New York finding. 

The ramifications of that decision could lead to even more 
problems: Is a donor father obligated to pay child support? 
Could his child inherit his estate? And so it goes. Scientific 
advance, it seems, has again outpaced society in its ability to 
cope. 



191 



Editorial, The New York Times, Thursday, July 27, 1982, p. A22. 



WHETHER TO MAKE PERFECT HUMANS 



The rapid advance of genetic engineering raises a ques- 
tion fundamental to the nature of man: Should inheritable 
alterations to the human gene set be permitted? Unfortunately, 
genetic engineers, resentful of recent public debate over the 
health hazards of gene splicing, seem more interested in quietly 
perfecting their craft than in collaborating in a new inquiry 
into its consequences. 

Biologists have already attempted to repair the genetic 
defect that causes the blood disease betathalassemia by intro- 
ducing copies of the normal gene into a patient's bone marrow 
cells. The technique does not yet work, but in time, it or 
others will. Changing the genes in the ordinary cells of the 
body presents no special problem because, like any other surgical 
intervention, the change dies with the patient. 

But researchers are already contemplating a more thorough 
cure for genetic disorders, that of correcting the defective 
gene in a person's germline cells — the eggs or sperm. Repairs 
of this sort represent an altogether novel change because they 
would be passed on to the patient's descendants. 

On first impression, that sounds like the finest kind of 
medical advance. It might, for instance, allow eradication 
within a generation of such scourges as sickle-cell anemia. 
But consider some possible consequences. 

There are a finite number of human genes and therefore a 
lesser number of genes that are sometimes defective. Maybe a 

192 



genetic package could be developed containing normal copies of 
all such genes. What if all children received such a package 
as routinely as vaccinations, creating a physically perfect 
population? Might not so large a change alter the species? 
Might it even create a new species, bearing in mind how minute 
a difference there seems to be between our DNA and that of our 
nearest relatives, the higher apes? 

Theologians may have doubts about making man perfect; 
should not biologists share them, even if for rather different 
reasons? 

Repairing a defect is one thing, but once that is routine, 
it will become much harder to argue against adding genes that 
confer desired qualities, like better health, looks or brains. 
There is no discernible line to be drawn between making inheri- 
table repairs of genetic defects, and improving the species. 

The question is not whether but when such genetic change 
will become possible. There are no evident limits to the 
powerful tools that molecular biologists now have available. 
Once the biological machinery is completely understood, we are 
likely to be able to tinker with it. 

At the request of three church groups, the President's 
Commission for the Study of Ethical Problems is considering the 
implications of genetic engineering for human existence. It 
may get little help from biologists; despite having gained all 
they wanted during the recent discussion of health hazards, they 
mistrust the public's capacity for rational debate and don't 
want genetic engineering to again become the focus of attention. 

193 



f Other Government agencies have exhaustively studied the 
immediate issues, including risk and industrial applications. 
The commission, if it wishes to make a unique contribution, 
will look at the longer-term aspects. In particular, the ques- 
tion of whether the human germline should be declared inviol- 
able deserves close attention. 

Such a restriction will probably prove unjustifiable. But 
deliberate manipulation of the human germline will constitute 
a watershed in history, perhaps even in evolution. It should 
not be crossed surreptitiously, or before a full debate has 
allowed the public to reach an informed understanding of where 
scientists are leading. The remaking of man is worth a little 
discussion. 




194 



TRANSITION 



From Session Four to Session Five 



SUGGESTED SCRIPTURE 



Isaiah 55:1-13 



Micah 6:1-8 
Matthew 6:22-33 
Matthew 22:15-22 
Mark 2:23-28 
Mark 4:21-25 

FOCUSING QUESTIONS: 

1. In biblical terms, technology was made for people, not 
people for technology: (1) In what ways does this affect 
the ethical and social purposes of biotechnology? (2) In 
what ways does this affect the understanding and control 
of biotechnology? 

2. Does the status of economics in our society affect the 
development and use of biotechnology? 

3. How does the promise of biotechnology address human needs 
for security? 



4. What do you consider to be the most important values ex- 
pressed in the Old and New Testaments? What values are 
emerging as a result of the new developments in bio- 
technology? 



195 



In Session Five, "The Business of Biology," we shall explore 
issues of value that arise as applications of new develop- 
ments in biology are proposed for desired results. 



196 



Session 5 

The Business of Biology 



THE BUSINESS OF BIOLOGY 

This session seeks to clarify the complexity of values 
which are emerging as a result of new developments in biology 
as they find their application to human beings. Traditionally, 
we have valued an open and free society, but we now are con- 
fronted with at least two questions: Do traditional values of 
our free enterprise system with its marketing potential mean 
that entrepreneurs and corporations engaged in the production 
and sale of technology will forge ahead in directions of their 
own choosing? and/or: Are we in the process of developing 
new values to respond to the new biology and its implications 
for society? Another question is: What is the relationship 
of consumer desires and need to the promised benefits of new 
technologies? These questions are of increasing importance 
as social and economic considerations impinge upon ways in which 
the benefits of new technologies affect and will affect the 
beginnings of life. 

The case studies continue the discussion begun in the pre- 
vious chapter on problems of fertility. The focus, however, is 
on public policy and screening procedures for applicants seek- 
ing to benefit from sperm and ova banks. Background reading 
in this chapter include consideration of some of the moral is- 
sues in freezing human eggs and sperm. 

A second area in this session is the business of biology as 
related to environmental and occupational risks to fertility and 
healthy gestational development of fetuses. 



199 



Finally, how are we to manipulate the benefits of new 
technologies for desired results? An example here is a case 
of utilizing hormone production for potentially therapeutic or 
non-therapeutic purposes. 

The reader might well ask, "Where is the business of bio- 
logy taking us?" or, "Where will it end?" The hope is that 
this session will provide some clarity for the task of unravel- 
ing the complex issues and concerns as a prelude to an under- 
standing of justice raised for between session reflection in the 
Bible study at the end of this session. The final session then 
will focus on theology and whether there is any clear connection 
between theology and biology. 



200 



Session 5 



THE BUSINESS OF BIOLOGY 



PURPOSE 



GOALS: 



The purpose of this session is to increase aware- 
ness of the complex values within the relation- 
ships of biotechnology, economics, quality of 
life concerns, and social policy. 

The session is designed to (1) increase under- 
standing of the potential economic significance 
of biotechnology, (2) increase awareness of 
emerging values as these relate to human self- 
understanding, cultural ethos and public policy, 
(3) identify where and how these values are op- 
erative in the community, and (4) have partici- 
pants identify steps required to formulate and 
express ethical responses to the burgeoning 
business of biology. 



COMPONENTS 



Prayer 

Bible reading discussion 



Project reports on Sperm and Ova Banks and Re- 
search Companies in Biotechnology, etc. 
Four Cases: 

(1) The Nobel Sperm Bank 

(2) Embryo Banking: An Egg for Another 

(3) Fetal Vulnerability in the Work Place 

(4) Hormones and Gold Medals 
Background readings 
Transition 



201 






4 Cases 



I THE NOBEL SPERM BANK 

II EMBRYO BANKING: AN EGG FOR ANOTHER 

III FETAL VULNERABILITY IN THE WORK PLACE 

IV HORMONES AND GOLD MEDALS 




5.1 



THE NOBEL SPERM BANK 



In April, 1982, Joyce Kowalski, age 39, gave birth to a 
healthy 9-pound daughter — the first of the "Nobel Sperm Bank" 
babies. Her husband, Jack, in an interview with the National 
Enquirer said, "We'll begin training Victoria on computers 
when she's 3, and we'll teach her words and numbers before 
she can walk." A few months after Victoria's birth, it was 
disclosed that the parents were convicted Federal felons who 
lost custody of Mrs. Kowalski's two children from a previous 
marriage after allegations of child abuse. 

The sperm bank is called the Repository for Germinal 
Choice. Following publicity about the Kowalski case, a spokes- 
person for the repository conceded that screening prospective 
mothers had been less than thorough and that they would begin 
asking about criminal records of women applying for insemination 

Questions : 

1. Is this case an example of sexism? What is the role of 
women in genetics? What issues are involved? Should 
screening criteria be applied equally to prospective 
fathers? 



2. What kinds of records are or might be kept by sperm and 
ova banks, and for what purposes? 

3. The columnist George Will has written: "persons who de- 
cide ... to have a child with--they assume—certain ad- 

203 



vantageous natural endowments, are persons whose feelings 
for the child are apt to be unnatural, at best, and to be 
contingent on the child manifesting the attributes the 
parents 'ordered 1 . 1 ' How do you respond to this statement? 

4. Can a quality of intelligence be reproduced by means of 
artificial insemination? What about the qualities of com- 
passion, courage, generosity, love? 

5. How do efforts of genetic improvement relate to human ful- 
fillment? 



204 



5.2 EMBRYO BANKING: AN EGG FOR ANOTHER 

Researchers at Monash University in Melbourne, Australia, 
have begun freezing embryos fertilized in_ vitro in liquid 
nitrogen so that they can be thawed and replaced in a patient 
"if, and when" the patient decides that she wants a, or another, 
child by in vitro fertilization. And if the patient decides 
against having the child the embryos could be offered to 
other women. 

So far no embryo has been successfully stored and reim- 
planted, but one of the researchers, Alan Trounson, has stated, 
"We're concentrating on freezing the two-, four-, and eight- 
cell stage of development and ... in the order of 50 percent 
of the embryos are looking perfectly good and developing on a 
short-term culture, after thawing. The earlier stage (i.e., 
two- and four-stage) embryos are proving far more difficult 
to freeze — down to 20 percent." 

Questions : 



1. How do your moral values relate to the removal of a human 
egg from a woman for fertilization? What about freezing 
the egg for later use in the same woman or in another woman? 

Z. What rights does a sperm donor/vendor have? 

3. What do you consider to be the legal status of a child con- 
ceived in this way? 

4. What policy ought to govern the use of sperm for artificial 

205 



insemination and research? 

5. What policy ought to govern the use of spare embryos for 
research or banking? 

6. Whose property is the embryo? Who is responsible for it? 



206 






5.3 FETAL VULNERABILITY AND THE WORKPLACE 

You are the owner of a company that has made lead paint 
for twenty-five years- You are aware of a report issued by 
the federal Occupational Safety and Health Administration 
(OSHA) which states that exposure to lead can produce toxic 
effects in both men and women. Included among the toxic ef- 
fects is the danger that overexposure to lead can cause damage 
to both sperm and ova and thus could have profoundly adverse 
effects on the reproductive ability of male and female work- 
ers in the lead industry. The pigments unit of your company 
falls within the classification of lead industries subject to 
the lead standard set by OSHA. This requires that all workers 
be protected from contact with lead when their blood level 
reaches a certain point. 

Questions : 

1. What steps might you as company owner take to achieve a 
safe work environment? What measures might be adopted to 
assure the safety of your workers and their potential off- 
spring? 

2. Does full disclosure concerning workplace hazards protect: 

(a) the company? (b) the worker? 

3. How might knowledge of occupational hazards lead to sex 
discrimination in employment or to coercive labor prac- 
tices? 

207 



4. How do the needs of your company, the workers, and the 
potential offspring of workers conflict? Can the values 
of each be upheld and brought together in terms of an 
appropriate company policy? 

5. Worker compensation laws prohibit employees from suing 
employers, but do not cover offspring or family members. 
Would you favor an attempt to extend these laws to cover 
family and offspring? 

Questions of Larger Issues: 

6. Environmental and occupational hazards affect all of us. 
What is your understanding of the problems associated with 
toxic substances? 

7. What structures exist in our society for lessening risks 
of toxic substances in the work place and in the environ- 
ment? (Expand the discussion to include dioxin, acid rain, 
radiation, DES , etc.) 



208 



5.4 HORMONES AND GOLD MEDALS 

You are a community representative on the Board of Di- 
rectors of Zoetech, Inc. The company plans to raise capital 
by selling stock. It plans to do this with an announcement 
concerning the production of large quantities of human growth 
hormone using genetic engineering techniques. The following 
draft of this announcement is presented to the Board; you are 
asked to comment and to criticize: 

"Zoetech, Inc. a company specializing in biotech- 
nology and genetic engineering is pleased to 
announce that it looks forward to the production 
and marketing of large quantities of a human growth 
hormone. Natural supplies of this substance, only 
small quantities of which are now available, have 
proven effective in the treatment of certain types 
of dwarfism. Zoetech will be able to produce 
quantities of human growth hormone using advanced 
genetic engineering techniques. The laboratory- 
produced human growth hormone is now being tested 
for both safety and effectiveness. It is antici- 
pated that this hormone will be available by pre- 
scription for therapeutic use throughout the 
country. 

Zoetech, Inc. is pleased to announce this develop- 
ment towards the treatment of certain height prob- 
lems. However, the company wishes to stress that 

209 



at this time it does not anticipate uses of 
human growth hormone for other than thera- 
peutic purposes. Thus, the company does not 
anticipate a market for this hormone for such 
purposes as compensation for nutritional de- 
ficiencies, natural smallness as is found in 
certain populations around the world, or the 
enhancement of stature for certain kinds of 
athletic participation and competition. This 
produce will not be marketed to effect cosmetic 
changes, however much desired. 

Zoetech, Inc. does anticipate a significant mar- 
ket for therapeutic uses of this human growth 
hormone and will continue its biogenetic research 
in other areas of promise for the future." 
Dr. Cole Jones, staff scientist and molecular biologist 
from Sci-Tech University, and Mr. John Jacob Jackson, LLB, 
President of Zoetech, Inc., will respond to questions from 
the Press. 

Questions : 

(The following might be dealt with in a role play situation.) 

1. As a Board member, what are your comments and questions and 
criticisms? 

2. How does Zoetech 's plan to sell stock affect the content 
of the announcement and its manner of presentation? 



210 



3. Are there any appropriate non-therapeutic uses of human 
growth hormone? 

4. Overuse and over-prescription represent inappropriate uses 
of therapeutic drugs. Historically, the nontherapeutic 
uses of addictive/mood-altering drugs has been considered 
an illegal act of drug abuse in this society. What so- 
cietal consensus do you think will form around the ques- 
tion about non-therapeutic uses of human growth hormone? 
For example, would it be appropriate to make the hormone 
available to an average-sized youngster who yearns to be- 
come a basketball star? 



211 



ARTIFICIAL INSEMINATION: BEYOND 
THE BEST INTERESTS OF THE DONOR 
By: George J. Annas, J.D., M.P.H. 

Recent ethical and legal discussion concerning novel ways 
of reproduction has focused on in vitro fertilization, a pro- 
cess that has never been successfully used in this country, 
while assuming that most of the issues surrounding another 
technique that has been successfully used an estimated 250,000 
times have been more or less resolved. Artificial insemination 
by donor (AID) is a cottage industry on the verge of mass mar- 
keting. The May 14, 1979, issue of Advertising Age noted that 
two commercial sperm banks each fill over 100 orders a month, 
and one is preparing to market sperm directly to consumers. In 
the near future, a "home insemination kit," complete with sperm 
and instructions on use, is possible. The following ad, now 
directed to physicians, could appear soon in popular magazines 
and newspapers: "From our panel of excellent donors, you sel- 
ect one for yourself based on blood type, ethnic origin, race, 
height, weight, and coloration of skin, hair and eyes." 

In Island , his vision of the ideal society, Aldous Huxley 
writes of a time when everyone will use AID voluntarily (at 
least for a third child) with donors picked from a "central 
bank of superior stocks" to increase the general IQ of the 
population. In George Orwell's more sinister society, descri- 
bed in 1984, artificial insemination is mandatory, and all 
marriages must be approved in advance by the Party. While 

212 



neither of these futures seems an immediate threat, the per- 
ceived legal difficulties, general desire for secrecy, and 
cottage-industry nature of AID have all conspired to prevent 
any meaningful standards from developing, and make any future 
for AID the product of chance rather than policy. 

We are faced with a technology that has the potential to 
make major changes in our reproductive habits, that has been 
poorly thought out, and if it is "gaining public acceptance," 
is probably doing so under false pretenses. Until very re- 
cently the best one could do was conjecture about the prac- 
tices in doctors' offices and infertility clinics. However, 
three researchers from the University of Wisconsin recently pub- 
lished the results of their survey of 379 practitioners of AID 
who accounted for approximately 3,500 births in 1977 (of an 
estimated total of 6,000 to 10,000 annually in the United 
States ) (M. Curie-Cohen, L. Luttrell, and S. Shapiro, "Current 
Practice of Artificial Insemination by Donor in the United 
States," New England Journal of Medicine 300 (March 15, 1979), 
585) . 

The results are disturbing. Besides pointing to a general 
lack of standards and the growing use of AID for husbands with 
genetic defects and for single women, the findings tend to in- 
dicate that current practices are based primarily on protecting 
the best interests of the sperm donor rather than those of the 
recipient or resulting child. Two areas merit immediate atten- 
tion: donor selection and record keeping. 



213 



Donor Selection 

The term "donor" is a misnomer. Virtually all respondents 
in the Curie-Cohen study bought ejaculates, 90 percent paying 
from twenty to thirty-five dollars per ejaculate. A more ac- 
curate term would be "sperm vendors." While this distinction 
may seem trivial, it has legal consequences. For example, it 
makes no sense to designate the form signed by the vendor as a 
"consent form" since he is not a patient and is not really con- 
senting to anything. It is a contract in which the vendor is 
agreeing to do certain things for pay. Moreover, continued 
use of the term "donor" gives the impression that the sperm 
vendor is doing some service for the good of humanity and de- 
serves some special protection, rather than simply performing 
a service for pay. The problems with paid "donors" have been 
amply explored in Richard M. Titmuss's classic study of the blood 
market, The Gift Relationship ; similar problems arise in the 
sperm business. 

The actual selection and screening of sperm vendors, how- 
ever, is more important than the term employed to describe 
them. The Curie-Cohen study found that 80 percent of all phy- 
sicians use medical students and hospital residents all or most 
of the time. In this regard sociobiologists have found that 
animals will employ that reproductive strategy that maximizes 
the spread of their genes. In the words of Richard Dawkins in 
The Selfish Gene , "Ideally what an individual would 'like 1 (I 
don't mean physically enjoy, although he might) would be to 
copulate with as many members of the opposite sex as possible f 

214 



leaving the partner in each case to bring up the children." 
Artificial insemination, of course, adds an entirely new 
technology to use in pursuing this strategy. 

There can be little debate that physicians in all of these 
situations are making eugenic decisions — selecting what 
they consider "superior" genes for AID. In general they have 
chosen to reproduce themselves (or those in their profession) , 
and this is what sociobiologists would probably have predicted. 
While this should not be surprising, it should be a cause for 
concern. Physicians may believe that society needs more in- 
dividuals with the attributes of physicians, but it is unlikely 
that society as a whole does. Lawyers would be likely to 
select law students; geneticists, graduate students in genetics; 
military personnel, students at the military academies, and so 
on. The point is not trivial. Courts have found in other 
contexts that physicians have neither the training nor the social 
warrant to make "quality of life" decisions. In the Houle case, 
for example, a physician's decision not to treat a defective 
newborn was overruled on the basis that "the doctor's quali- 
tative evaluation of the value of the life to be preserved is 
not legally within the scope of his expertise." Selecting do- 
nors in this manner, rather than matching for characteristics 
of the husband, for example, seems to be primarily in the best 
interests of the physician rather than the child, and probably 
cannot be justified. 

More than this, the Curie-Cohen survey revealed that even 



215 



on the basis of simple genetics, physicians administering AID 
"were not trained for the task" and made many erroneous and 
inconsistent decisions. Specifically 80 to 95 percent of all 
respondents said they would reject a donor if he had one of the 
following traits, and more than 50 percent of all respondents 
would reject that same donor if one of these traits appeared 
in his immediate family: Tay-Sachs, hemophilia, cystic fibro- 
sis, mental retardation, Huntington's chorea, translocation or 
trisomy, diabetes, sickle-cell trait, and alkaptonuria. This 
list includes autosomal recessive diseases in which carriers 
can be identified, and those in which they cannot, dominant, 
X-linked, and multigenic diseases. 

The troubling findings are that the severity and genetic 
risk of the condition was not reflected in rejection criteria, 
and that genetic knowledge appears deficient. For example, 71 
percent would reject a donor who had hemophilia in his family, 
even though this X-linked gene could not be transmitted unless 
the donor himself was affected. Additionally, although 92 per- 
cent said they would reject a donor with a translocation or 
trisomy, only 12.5 percent actually examined the donor's kary- 
otype. Similarly, while 95 percent would reject a carrier of 
Tay-Sachs, fewer than 1 percent actually tested donors for 
this carrier state. 

Physicians might be giving medical students far more credit 
than they deserve for a knowledge of their own genetic and fam- 
ily history, honesty, and freedom from venereal disease. Even 
so, the conclusion must be that while prevention of genetic 

216 



disease is a goal, it cannot be accomplished by the means cur- 
rently in use. The findings also raise serious questions about 
the ability of these physicians to act as genetic counselors, 
and suggest that other nonmedical professionals may be able to 
do a better job in delivering AID services in a manner best 
calculated to maximize the interests of the child and not just 
those of the sperm donor. 

Record-Keeping 

While the Curie-Cohen survey found that 93 percent of 
physicians kept permanent records on recipients, only 37 per- 
cent kept permanent records on children born after AID and only 
30 percent kept any permanent records on donors. The fear of 
record-keeping seems to be based primarily on the idea, common 
in the legal literature, that if identifiable, the donor might 
be sued for parental obligations (for example, child support, 
inheritance, and so on) by one of his "biological children" 
sired by the AID process, and that this suit might be success- 
ful. The underlying rationale is that unless anonymity is 
assured, there would be no donors. There are a number of re- 
sponses to this argument: 

(1) It is important to maintain careful records to see how 
the sperm "works" in terms of outcome of the pregnancy. 
If a donor is used more than once, a defective child should 
be grounds for immediately discontinuing use of the sperm 
for the protection of potential future children. Since the 
survey disclosed that most physicians have no policy on how 

217 



many times they use a donor and 6 percent had used one 
for more than 15 — with one using a donor for 50 pregnancies- 
this issue is more likely to affect the life of a real 
child than the highly speculative lawsuit is to affect 
the life of a donor. 

(2) No meaningful study of the characteristics and success of 
donors can ever be made if there are no records kept con- 
cerning them. 

(3) In those cases where family history is important (and it 
is important enough to ask every donor about his) the AID 
child will never be able to respond accurately. 

(4) Finally, and most important, if no records are kept the 
child will never, under any circumstances, be able to de- 
termine its genetic father. Since we do not know what the 
consequences of this will be, it cannot be said that de- 
stroying this information is in the best interests of the 
child. The most that can be said for such a policy is that 
it is in the best interests of the donor. But this is 
simply not good enough. The donor has a choice in the 
matter, the child has none. The donor and physician can 
take steps to guard their own interests, the child cannot. 

Given the recent history of adopted children and their 
efforts to identify their biological parents, it is likely 
that if AID children learn they are the products of AID, they 
will want to be able to identify their genetic father. It is 
now accepted practice to tell adopted children that they are 
adopted as soon as possible, and make sure they understand it. 

218 



It is thought that they will inevitably find out some day, and 
the blow will be severe if they have been deceived. In AID 
the consensus seems to be not to tell on the grounds that no 
one is likely to find out the truth since to all the world the 
AID pregnancy appears to have occurred normally. 

Moralists would probably agree with Joseph Fletcher who 
has argued that the physician should not accept the suggestion 
that a husband's brother be used as a donor without the wife's 
knowledge (the husband's intent is to keep the "blood line" in 
his children) because this would be a violation of "marital 
confidence." It would seem that a similar argument can be 
made of consistently lying to the child, that is, that it is a 
violation of "parental confidence." There is some evidence that 
AID children do learn the truth, and the only thing that the 
fifteen state legislatures that have laws pertaining to AID 
agree on is that the resulting child should be considered 
legitimate--an issue that will never arise unless the child's 
AID status is discovered by someone. 

Not keeping records can also lead to bizarre practices. 
For example, some physicians use multiple donors in a single 
cycle to obscure the identify of the genetic father. The Curie- 
Cohen survey found that 32 percent of all physicians utilize 
this technique, which could be to the physical detriment of the 
child (and potential future children of a donor with defective 
sperm) and cannot be justified on any genetic grounds whatsoever 

A number of policies would have to be changed to permit 
open disclosure of genetic parenthood to children. The first 

219 






is relatively easy: a statute could be enacted requiring the 
registration of all AID children in a court in a sealed record 
that would only be available to the child; the remainder of the 
statute would provide that the genetic father had no legal or 
financial rights or responsibilities to the child. Variations 
would be to keep the record sealed until the death of the donor, 
or until he waived his right to privacy in this matter, or to 
only disclose genetic and health information. In the long term, 
a more practical solution may lie in only using the frozen 
sperm of deceased donors, in which case full disclosure could be 
made without any possibility of personal or financial demands 
on the genetic father by the child. 

Conclusions 

Current AID practices on donor screening and record-keeping 
are based primarily on protecting the interests of practitioners 
and donors rather than recipients and children. The most likely 
reason for this is found in exaggerated fears of legal pitfalls. 
Policy in this area should be dictated by maximizing the best 
interests of the resulting children. The evidence is that 
current practices are dangerous to children and must be modi- 
fied. Specifically, consideration should be given to: 

(1) Removing AID from the practice of medicine and placing it 
in the hands of genetic counselors or other nonmedical per- 
sonnel (alternatively, a routine genetic consultation could 
be added to each couple who request AID) ; 

(2) Development of uniform standards for donor selection, in- 

220 



eluding national screening criteria; 

(3) A requirement that practitioners of AID keep permanent 
records on all donors that they can match with recipients 
(I would prefer this to become common practice in the pro- 
fession, but legislation requiring court filing may be 
necessary) ; 

(4) As a corollary, mixing of sperm would be an unacceptable 
practice and the number of pregnancies per donor would be 
limited; 

(5) Establishment of national standards regarding AID by pro- 
fessional organizations, with public consultation; 

(6) Research on the psychological development of children who 
have been conceived by AID, and their families. 

In the New England Journal of Medicine , Dr. S. J. Behrman 
concludes his editorial on the Curie-Cohen survey by question- 
ing the "uneven and evasive" attitude of the law in regard to 
AID, and recommending immediate legislative action: "The time 
has come — in fact, is long overdue— when legislatures must set 
standards for artificial insemination by donors, declare the 
legitimacy of the children, and protect the liability of all 
directly involved with this procedure. A better public policy 
on this question is clearly needed." 

Agreement with the need for "a better public policy" is 
not synonymous with immediate legislation. The problem with 
AID is that there are many unresolved problems with it, and 
few of them are legal. It is time to stop thinking about uni- 
form legislation and start thinking about the development of pro- 
fessional standards. Obsessive concern with self-protection needs 
to give way to concern for the child. 

221 



From Newsweek, April 5, 1982, p. 69-70 

THE BIG BUCKS OF BIOLOGY 

Will the sound of the cash register drown out the clink 
of test tubes in university biology labs? It is a question 
that troubles many of the nation's best scientists. They worry 
that the commercialization of biology — the rush to market ev- 
erything from artificial insulin to drought-resistant crops- 
is turning science into the handmaiden of industry and corrup- 
ting the nature of basic research. Last week, in an effort to 
work out the tempestuous relationship, the presidents and lead- 
ing scientists of five universities met at the California resort 
of Pajaro Dunes to discuss the issue with their counterparts in 
industry. "We don't want to impose guidelines that bind every- 
one," says Jarue Manning, chairman of the microbiology depart- 
ment at the University of California at Davis, "(but we do want 
to) develop a dialogue that will eventually form a code of be- 
havior. " 

Academic science has climbed down from the ivory tower be- 
fore, to produce such technological marvels as the chips of 
Silicon Valley and the liquid energy of Gatorade. But the prob- 
lems of commercializing biology are significantly different from 
those faced when chemistry and electronics went corporate. "There 
is the scale of the damn thing," says David Saxon, president of 
the University of California. "The notion of millionaire pro- 
fessors is just not present in other fields. There is also the 
speed with which biotechnology breaks — it goes from lab to 
commercial overnight." 

222 



It was only nine years ago that biologists succeeded in 
easily splicing genes from one organism to another. Today 
about 170 companies in the United States alone have sprung up 
to sell the wares of recombinant DNA and other biotechnologies. 
Gene fever on Wall Street sent the stock of one, Genentech, 
Inc., soaring from $35 to $89 on its first day of sale. Al- 
though industry still funds only 3 percent of the university 
research budget, biotechnology has recently wooed millions of 
dollars to academic labs. Last year Du Pont gave Harvard Medi- 
cal School $6 million for the study of molecular genetics; 
Mallinckrodt , Inc., signed a $3.9 million agreement with 
Washington University for antibody research, and MIT allowed 
industrialist Edwin Whitehead to establish the $127 million 
Whitehead Institute for Biomedical Research affiliated with the 
school. "Everybody's got the fever," says a Harvard official. 
"DNA is like Midas ' s gold--anyone who touches it goes crazy." 

The commercial potential of their work has already affected 
the way biologists do business. A few of the problems: 

• Secrecy . Exchanging results straight out of the petri dish 
is crucial to science because it spurs new ideas and discourages 
unpromising experiments. Although it is a practice honored as 
much in the breach as in the observance, the infusion of bio- 
dollars is making some scientists even more closemouthed . For- 
merly, scientists shared their thoughts because they assumed 
that, having come up with an idea, they would be first to develop 
it. But with industry sniffing around for lucrative projects, 
says biologist Emanuel Epstein of UC Davis, "you can't mention 

223 



something you're thinking about because a private firm can have 
five post-docs on the job the day after tomorrow." That fear 
has silenced some biology corridors. A UC San Francisco com- 
mittee reported that because so many of its scientists were 
affiliated with Genentech, "people were loath to ask ques- 
tions and give suggestions in seminars . . . there was a feel- 
ing that someone might take an idea and patent it." 

• Research priorities . The fear is that profits and not 
truth will guide science. "The biggest danger is that the best 
people will be directed to applied research in industry," says 
plant geneticist Mary-Dell Chilton of Washington University. 
"If there is any lesson from the history of science, it is that 
we always find the best things when we are looking for something 
else." Even changing directions within basic research can be un- 
wise, says Stanford biologist Robert Schimke, "for we could 
snuff out whole areas of intellectual interest that might be 
important twenty years down the road." 

♦ Conflicts of interest . Commercialized biology imperils 
academia's role as impartial adviser on science policy. MIT's 
David Baltimore, for instance, is a Nobel Prize winner and one 
of biology's most respected members; he also owns more that 
$2.5 million worth of Collaborative Research, Inc., a biotech- 
nology firm, and serves on the committee that evaluates the 
safety of recombinant DNA for the government. With such ties, 
says Rep. Albert Gore of Tennessee, "Our ability (to get advice 
on the policy implications of new discoveries) is diminished." 

224 



• Graduate study . Students suffer from the double lives 
of professors who have one foot in academia and one in indus- 
try. At a university lab directed by an official of Biogen 
S.A., for instance, two post-docs were reportedly pitted 
against each other on the same project in the hope that the 
competition would produce quick results. That is a cardinal 
sin in science, since the researcher who finished second would 
have nothing to show for his fellowship. At UC Davis, students 
complain that Raymond Valentine, who is vice president of Cal- 
gene, abruptly switched their projects after they'd spent two 
years on them. In some cases, charges biologist Raymond Rod- 
riguez, "grad students have had their projects changed to serve 
commercial interests." 

The silver lining in these clouds is that biology may not 
be quite the living El Dorado it appears. Many of the current 
problems stem from too much venture capital chasing too few 
biologists. "Money pursuing ideas yet unborn is bound to create 
strain," says David Ragone , president of Case Western Reserve 
University. But as the bio boom slows down, and the shakier 
businesses fail, the survivors will build their own in-house 
staff of scientists. They will wind up with former faculty 
members who aren't interested in teaching anyway, and then, 
predicts Herbert Fusfeld of New York University, "the companies 
will stop grabbing people out of the university and start raid- 
ing each other." 

In the meantime, negotiators like Edward MacCordy of Wash- 
ington University have worked out agreements that seem to cir- 

225 






cumvent most of the standard worries raised by industry spon- 
sorship of academic research. His university retains patents 
to make sure a beneficial discovery reaches the public; if the 
sponsoring firm refuses to market it, the university can take 
away the company's exclusive license. He allows a firm only a 
few months of lead time to read the results of experiments be- 
fore they are published. And in the Mallinckrodt agreement, 
Washington University retains control over how the money is 
spent, since the committee dispensing it is composed of four 
university scientists and one company man. Only scientists car. 
tell what is worthwhile to fund," MacCordy insists. "Lawyers 
and financiers can't." 

Spin-offs: The most problematic relationships between 
science and industry involve professors, like Davis's Valentine, 
who serve both a university and a corporation. But even these 
arrangements can be made to work. Bacteriologist Winston Brill 
has successfully managed to oversee his lab at the University 
of Wisconsin at Madison while directing Cetus Corp . ' s plant- 
genetics lab. Brill, who was once frustrated because he lacked 
the means to develop practical spin-offs of his basic research, 
now has all the support, equipment and technicians he needs to 
pursue his goal of engineering a crop that needs little fertil- 
izer . 

At Pajaro Dunes, the conferees came up with principles that 
should help more universities do business with industry and still 
preserve their integrity. They recommended that all such ties 
be made public and that exclusive licenses be permitted "only 

226 



for the interval necessary to encourage (the product's) de- 
sired development." Most important, they urged universities 
never to pressure faculty and graduate students to do work 
with potential commercial implications. It is a promising 
beginning and may lead to just the marriage contract academia 
and industry need. 

Sharon Begley with Gerald C. Lubenow and Pamela Abramson in 

San Francisco, 
John Carey in St. Louis, Phyllis Malamud in Boston and Mary 

Hager in Washington 




227 



TRANSITION 
From Session Five to Session Six 

SUGGESTED SCRIPTURE: 
Exodus 21:22-25 
Amos 7:1-9 
Isaiah 40:1-5 
Matthew 5:38-4 8 
Matthew 7:1-5 

FOCUSING QUESTIONS: 

James B. Nelson, professor of Christian Ethics at United 
Theological Seminary of the Twin Cities, in his book, Human 
Medicine , writes: 

In its narrowest sense justice is often perceived as 
simple conformity to law . But the biblical notion--and that 
of wise persons in every culture--goes beyond that to press 
toward distributive justice. Of the present norms governing 
the distribution of health care benefits, responsibility asks 
the question, are they fair and humanizing? How shall we allo- 
cate our scarce medical resources for a more human society? How 
much, for example, shall we invest in additional heart trans- 
plants and genetic research over and against inoculation pro- 
grams and child health care among the poor? Distributive jus- 
tice also presses us toward compensatory justice. Those against 
whom the dominant groups in society have discriminated now ought 
to have special claims upon us. Theirs is a just priority. 

Justice under the impetus of love thus presses toward 

228 



creative justice. Distributive justice gives to a person what 
is due to him. Compensatory justice makes amends for past un- 
fairness. Paul Tillich reminds us that justice goes beyond 
even these quantitative measurements, necessary though they 
may be : 

What is the criterion of creative justice? 
In order to answer this question one must 
ask which is the ultimate intrinsic claim 
for justice in a being? The answer is ful- 
fillment within the unity of universal ful- 
fillment. The religious symbol for this is 
the kingdom of God. 

Seen in this manner, creative justice is a 
form of reuniting love. It unites us with 
that to which we are essentially bound but 
from which we have in fact become estranged. 
(Augsburg Publishing House, Minneapolis, Minn., 
1973, pp. 188-9) 

1. How do you think the four types of justice Nelson mentions 
accurately reflect the concepts of justice and righteous- 
ness found in the scripture passages above? 

a. What are the strengths and weaknesses of laws? 

b. What are the strengths and weaknesses of guidelines? 

c. What are the strengths and weaknesses of policies? 

2. How do these insights relate to responsible direction and 
control of biotechnology? 

3. How does Jesus' cry, "My God, my God, why have you forsaken 
me?" relate to creative justice? 

In Session Six, "Theological Viewpoints," we shall consider 
perspectives on the importance of the developments in biology 
as these relate to religious affirmations concerning life. 



229 



Session 6 

Theological Viewpoints 



THEOLOGICAL VIEWPOINTS 

In this last chapter and final session of the curriculum, 
we must try to pull together some theological or religious un- 
derstanding in response to the developments in biology, and 
say something about the overall relationship of religion and 
science. 

Initially, it was our intention to examine some represen- 
tative approaches to science from different traditions, i.e., 
Judaism, Orthodoxy, Catholic Morality, Protestant Theology. A 
serious problem was a lack of consensus among writers in any 
one tradition. This dividedness among the religious community 
points out the need for addressing these problems and working 
for the development of an ecumenical consensus. Our intent, 
therefore, was put aside in favor of presenting some viewpoints 
which hopefully would help readers and participants clarify 
their own individual and collective understanding regardless 
of a particular tradition. 

This study guide has not attempted to suggest in any way 
what biology and technology may or may not do. Nor has it 
sought to hold up one ethical response as greater or better 
than others in areas of conflicting values. Life is not so 
simple; there are too many ambiguities. What is important is 
the way in which we think through those decisions which affect 
human life both for ourselves and others, and for those of 
succeeding generations. The task is ominous; the responsibilities 
are, at the same time, full of risk and hope. 



232 



The Bible reading discussion which serves as the trans- 
ition from the last session to this one is about justice. 
How do we do justice, live rightly, and provide adequate care 
for others? It may be useful to make a list of responses, to 
this and the other questions asked in response to the Bible 
readings . 

The two articles in this session, "A Perspective on Life 
and Knowledge," and "Theology and Culture" provide viewpoints 
for discussion about the relationship of science and religion 
and our understanding of God in the context of present-day 
culture. A list of several discussion questions follows the 
articles. 

Two or more of the participants might begin the discussion 
by summarizing each of the articles and then either state 
their own views in response to them or suggest one or two 
starter questions for the discussion. 

Time will be needed for an evaluation of the entire series. 
A written instrument for this is provided, or a form of the 
leaders 1 own design might be used. 

Following the evaluation, the series might conclude on a 
positive and hopeful note with a party, reception, or liturgical 
celebration. 



233 



Session 6 



THEOLOGICAL VIEWPOINTS 



PURPOSE: 



GOALS : 



The purpose of this session is to increase aware- 
ness of theological viewpoints and to understand 
how these relate to new developments in biology. 

The session is designed to: (1) increase under- 
standing of one another's responses to our know- 
ledge of God and the new developments in biology; 
(2) identify how participants grapple with the 
issues of purpose and meaning before an uncertain 
future . 



COMPONENTS : Prayer 



Bible reading discussion 

A Perspective on Life and Knowledge — David A. Ames 

Theology and Culture — John H. Snow 

Discussion questions 

Evaluation 

Concluding reception or celebration 



234 



A PERSPECTIV E ON LIFE AND KNOWLEDGE 
By: David A. Ames 

Many years ago, a book written by J. B. Phillips was 
published under the title, Your God is Too Small . Although 
I do not remember very much about it, the concept suggested 
by the title that "your God is too small" has always stuck. 
Who is God? How are we to envision God? Whatever our answers 
to these questions, and whatever the answers of any portion of 
Christianity or Judaism, or of any religion, those answers are 
inadequate. God is both known and unknown, both present and 
absent, both revealed and hidden, both human and divine, both 
Word and Spirit. Or to state it in other terms, God is both 
Life and the Source or Creator of life. 

One of the major concerns for humanity is the search for 
meaning, purpose or destiny. Why life? Why human life? Where 
are we headed throughout the course of history? What is the 
goal? Philosophers, scientists, theologians, historians, poets 
and others focus on these questions. Their methods differ, 
but the basic human questions are the same. They have been the 
same throughout the ages. Ruth Nanda Anshen reminds us that 
Plato gave an indirect answer to the question, "What is man?" 
Ke said, "Man is declared to be that creature who at every 
moment of his existence must examine and scrutinize the con- 
dition of his existence. He is a being in search of meaning." 

One of the tools used by human beings in their search for 

235 



meaning is imagination. Imagination belongs to everyone. A 
film like "E.T. , The Extra Terrestrial" is a joy to hear and 
see because it is imaginative. It excites our imaginations. 
To hear a good story or to read a good book evokes our imag- 
inative response. A lot of good things have happened as a 
result of human imagination. Imagine what it would be like 
if we could fly. We have airplanes and we fly. Imagine what 
it would be like if we could move in outer space. We have 
rockets and we walk on the moon and maneuver outside our space- 
craft while in orbit. Imagine what it would be like if we 
could eradicate disease. We have broken the DNA code and are 
learning about how cells grow into healthy or diseased states. 
Imagination is important in our knowing and apprehending 
God. Our experiences of the holy, our sense of awe, our en- 
counter with the mysterious and the miraculous are all part of 
our imagination, our being imago dei . Human beings are created 
imago dei , in the image of God. Paul Tillich tells us that 

imagination is indispensable for the symbolic expression of 

2 

the experience of the holy. Often in entering a church, cathe- 
dral or temple, one experiences a sense of awe or a feeling of 
the presence of the holy. These magnificent structures are 
designed and built to enhance this experience. We might say 
that in them the imagination is concretized. The same kind of 
experience of the holy is often associated with the birth of a 
new infant. What is new and beautiful, what is magnificent and 
awe-inspiring are experiences of human imagination and they are 
symbols of the holy. 

236 



The Bible is the definitive expression of the essential 
elements in the life and faith of the people of God. It is a 
record of God's historical and ongoing relationship to all 
creation. It is also the record of human understanding of our 
relationship with God and what that means. Throughout the bib- 
lical record of this dynamic relationship we are told that the 
creation is good, that human beings are created in freedom and 
must therefore be responsible, that there are certain require- 
ments, duties, or commands which must be observed for the sake 
of order, well-being, and the care of one another. The command- 
ments given to Moses on Mount Sinai for all Israel (Exodus 20) 
have special significance in their delineation of God's relation- 
ship with us, ours with God, and ours with our fellow human be- 
ings. The prophet Micah, in calling Israel back into a right 
relationship with God at a time when the people had strayed, 
says: "God has told you what is good; and what is it that the 
Lord asks of you? Only to act justly, to love kindness, to 
walk wisely before your God." (6:8). In the New Testament, the 
Great Commandment summarizes what is required. A lawyer asks 
Jesus, "which commandment is first of all?" Jesus answered, 
'The first is, "Hear, O Israel: the Lord our God is the only 
Lord; love the Lord your God with all your heart, with all your 
soul, with all your mind, and with all your strength." The sec- 
ond is this: "Love your neighbor as yourself, "There is no 
other commandment greater than these."' (Mark 12:28-31). 

A great deal of history has happened since the Bible was 
canonized in its present form by the Church in the fourth cen- 

237 



tury. The world has changed; and so have human beings. With 
all the changes it has become difficult if not impossible for 
many people to accept either the Bible or any of the various 
manifestations of the Judeo-Christian religion in absolute 
terms. This is true of people both within and without the 
religious communities. As a result, the religious and the 
secular world have become divided. For example, universities 
originally were founded by churches and religious people for 
the purpose of educating and developing persons within the com- 
munity of faith. Today, most universities are secular, not 
religious, institutions. What is of concern is the continuing 
division of the religious and the secular. Often, religious 
people in their efforts to conserve the tradition, have failed 
to appreciate the contributions of cultural changes and develop- 
ments to the ongoing dynamic process of creation, evolution and 
history. Religion has been used negatively to judge many in- 
sights and developments. The persecution of Galileo is an ex- 
ample. On the other hand, many secular people in their efforts 
to be on the growing edge of developments in science and tech- 
nology, have failed to understand and appreciate the insights 
and contributions of the Judeo-Christian religion to the values, 
principles and quality of relationships essential for life and 
humane living. The Bible is the best-selling book in the world. 
How widely is it read, and how well is it understood by those 
who are religious and by those who are secularists? 

Changes are in order. "Religion must affirm the right of 
all functions of the human spirit--the arts and sciences, the 

238 



law and social relations and the state beyond them — to be in- 
dependent of religious control or interference. At the same 
time, the secular world must affirm the right of religion to 
turn toward the Ultimate —itself in its language and in all 
its expressions of the experience of the holy."-' 
The' ?, world is one world household....' We do not live in 
either a secular world or a religious world. It is all the 
same. 

There are some people who would claim that science is it- 
self a value-free enterprise. If that ever was so it certainly 
is not now. A perception existed that saw science as a disci- 
pline engaged in by individuals--a person working alone perhaps 
in a university laboratory searching for a clue to some hidden 
mystery or working on an experiment to prove a particular 
hypothesis. Science has come a long way. Research and scien- 
tific inquiry are significant programs within business, govern- 
ment, as well as within education. Great sums of private, 
corporate and public monies are expended. At its best science 
is engaged in the search for truth and knowledge. It is con- 
cerned about disease and the causes of disease; it is committed 
to human well-being and to the development of technologies that 
will serve the human community. All of these are laudable goals 
which, represent values that are important to uphold. It is the 
misuse of science that poses problems or sometimes the untoward 
results that would cause harm and thus create public outcry. 
The development of nuclear energy is a good example. The con- 
cern was for an endless supply of inexpensive energy that would 

239 



serve society's needs. A necessary alternative because of the 
limits of fossil fuels. The problems, however, now call this 
advance into question. The cost is far greater than originally 
thought, the hazards presented by radiation and the absence of 
an adequate technology for the disposal of plutonium waste are 
very serious and potentially life threatening. What price, 
what risk, what harm, is to be paid and for what promise, what 
gain, what benefit? Every science, whether natural, biological 
or social poses the dilemma of risk and promise. Who decides 
when it comes to doing research? Does government? the corpora- 
tion? the scientific community? the funding source? the public? 
This is a difficult and complex question and it is a matter of 
social policy which has become increasingly important for pub- 
lic discussion and debate. 

Neither is religion above criticism. Truth and knowledge 
are as important to religion as they are to science. The val- 
ues most often discussed as belonging to the realm of religion 
include love, justice, equality, the pursuit of wisdom, steward- 
ship of resources, and caring for others. All of these are im- 
portant and all have been misused or wrongfully used in the name 
of religion. Just think about the religious wars throughout 
history, or slavery, or discrimination because of sex or class. 
Who decides when it comes to religion? Is it an individual 
matter? What is the role of the church or synagogue or any 
other religious institution? What is the role of the state? 
Does the public have a say about religion? Does religious prayer 
belong in public schools? Should there be tax credits for 

240 



private, religious education? Is abortion or capital punish- 
ment against the law of God? These are important questions 
and they are not given to easy resolution. 

Science and religion perhaps have more in common than 
many practitioners in either area realize. They are separate 
realities with separate languages and separate methodologies. 
Yet, they need each other for they are both engaged in similar 
quests — the quest for knowledge and truth, and the quest for 
meaning and purpose. "Life is purposeful. Indeed, it is de- 
fined by its purpose . . . Life aims at the realisation of 
value, that is rich experience or aliveness . . . Life is not 
only purposeful in itself, but it is the source of all the 
derivative purposes in living things. Purpose involves a dis- 
tinction between what is and what might be and an appetition 
for some form of what might be. It is Life that introduces 
into the midst of the sheer givenness of the physical world 
the attractive vision of unrealised possibility." 
In this sense we need.- to understand science 
and religion in their proper relationship to each other; and 
how each may or may not contribute to the richness of exper- 
ience, the realization of value, and the purpose of Life. 

FOOTNOTES 

1. Anshen, Ruth Nanda, "Credo Perspectives" in my search for 
absolutes , by Paul Tillich, Simon and Schuster, New York, 
1967, p. 15. 

2. Tillich, Paul, my search for absolutes , op cit, p. 131. 

3. Ibid. , p. 141 . 

4. Birch, Charles and Cobb, John B. Jr., The liberation of 
life , Cambridge University Press, Cambridge, 1981, p. 197. 

241 



THEOLOGY AND CULTURE 
By: John H. Snow 

Human beings live a double life. As extensions of the 
biological world from which we derive we are pretty much like 
dogs. Most of us neither hunt nor farm. We get fed. We eat. 
We sleep. We reproduce (some of us). And, of course, we fol- 
low the iron rules of biological life. We are born, we grow, 
we mature, we diminish and we die. Biologically there is 
nothing particularly unique about us except our rather heavy 
brains, our penchant for walking upright and our deft, pre- 
hensile hands. In one respect, biologically, the dog has it 
all over us. Dogs know how to be dogs simply by obeying their 
genetic tapes. Humans haven't the faintest idea of how to be- 
come human until someone tells them. It's a matter of language; 
particularly, a matter of words. 

Yet human beings don't just make a simple dog-like adjust- 
ment to their natural environment. They do that, certainly, but 
they must also adjust one way or another to a quite different 
environment which we call culture and to which we are related 
by language, language in its most inclusive sense as anything 
which gives us access to information, anything which tells us 
something about what's going on within the human enterprise, or 
has gone on, or might go on. 

The trouble with language is that it is symbolic. This is 
particularly true of spoken and written language. We live, 
like dogs, in a biologically real world the rules of which can- 
not be violated, but we live as one removed from the world, 

242 






related to it by language, especially by words which we are 
forced to use to interpret our relationship to that world yet 
which are not that world but symbols of it. The map, as Korz- 
ybski says, is not the territory. The symbol is not that which 
it stands for. Humans have built an alternative environment to 
their natural environment which depends on symbolic communica- 
tion for its existence and which we call culture. It is a 
very dense, rich, complex environment and includes our tech- 
nology, our art, our religion and everything else that emerges 
from our being able to communicate with one another. 

It all came about because humans were put at one remove 
from nature (their own as well as their environment's) and were 
able to define the relationship between themselves and the rest 
of creation through symbols. Yet as Genesis says, along with 
the knowledge did not come immortality. Quite the opposite. 

A dog's genetic tapes know that a dog is going to die, 
but a dog doesn't. Dogs are not notably reflective or obsessed 
with meaning. Humans' genetic tapes also know that humans die, 
but the trouble is that humans know it too. Humans are not ex- 
actly come easy, go easy, about death. Along with the knowledge 
of their own deaths , humans notice and reflect upon the death 
of all living things and they are universally inclined to wonder 
if death doesn't have the last word. As St. Paul puts it, they 
are inclined to live under the dominion of sin and death, the 
dominion of Satan, who convinces them that since death has the 
last word the most meaningful use of human energy is devoting 
it to strategies of survival. The best you can do is to make a 

243 



deal to get a temporary reprieve, a Faustian bargain. 

Survival terror, then, is a uniquely human phenomenon 
and the proper function of culture (and of religion in particu- 
lar) is to mitigate its demonic effects or to transform it 
utterly into sacrificial love without which the human corporate 
enterprise becomes random and chaotic. But a curious thing 
has happened to Western culture, particularly American culture. 
Rather than working to mitigate or transform our obsession with 
our own survival, it has changed to bless and encourage it. 

Such a cultural dysfunction is for humans like a disas- 
trously faulty gene in another species. Our culture is defin- 
ing our humanity in maladaptive ways, in ways that more and 
more reduce our freedom by failing to distinguish between bio- 
logical determinism and the culture which gives us consider- 
able freedom from that determinism. Our biological environment 
like our human biological nature is still largely a given. From 
the earth we came and to the earth we shall return. Our cul- 
tural environment is, on the other hand a corporate human en- 
terprise. Humans made it and humans can, with considerable 
pain and difficulty, change it, though certainly not infinitely 
or in any way they want. What human freedom there is comes 
from the belief that love, not survival, is the primary goal 
and hope of humans. 

This is certainly not a widely held view of what humans 
should believe about themselves today, but ever since the 
1850 *s there has been a strain in Western, and particularly in 
American thought which has profoundly contradicted it. It is 

244 



not simply Darwin's theory of evolution; it is the applica- 
tion of evolutionary thought, particularly the concept of 
natural selection, to human history, notably in the work of 
Herbert Spencer, which had such an electric and deeply assim- 
ilated effect on American institutional life. 

While the Church, or much of it, was fighting Darwin's 
theory of creation, Spencer's doctrine of the survival of the 
fittest was meeting with the approval of a surprising number of 
Americans from university professors to the editors of country 
newspapers, to ordinary thoughtful people. 

In a large underpopulated free and minimally regulated 
country with apparently inexhaustible natural resources Spencer 
made a kind of sense. He maintained that the government should 
in no way interfere with the process of natural selection among 
human beings. Every individual should do everything in his 
power to advance his own fortune. In this way the weak, the 
undermotivated, the disabled, the poor, the chronically sick, 
the unintelligent, all would be eventually purged from the hu- 
man enterprise and out of all this competition would emerge 
the survivors. "The ideal man in the ideal society" (sic). 
Competition was the creative force in history which would 
eventually generate this perfect humanity. 

When some church people complained that this was a cruel 
and heartless social philosophy, Spencer replied that to be a 
survivor one should cultivate a private altruism. He believed, 
with Lamarck, that acquired characteristics could be inherited, 
and that this altruism would be passed on genetically to create 

245 



the perfect justice and mutuality of the ideal society which 
would emerge from the final cosmic superbowl. 

Whereas the Protestant ethos increasingly tended to see 
the poor as divinely unchosen or damned, Social Darwinism as 
it came to be called, saw the poor as unfit. The difference, 
from the point of view of the poor, was slight. Yet the moti- 
vation to prove fitness was in the short run socially and 
economically effective in a land of such extraordinary free- 
dom and opportunity, at least for those who were white. Those 
of another color were given the devastating role of proving 
Spencer was right. It was too bad about Blacks and native 
Americans, but they were clearly maladaptive remnants of the 
species and destined to serve it or to become extinct. 

In the universities, Spencer was a major force in causing 
the split off from philosophy of psychology and sociology as 
independent disciplines. He is often referred to as the "fa- 
ther" of modern sociology. His influence on G. Stanley Hall, 
founder of Clark University and the discipline of child study, 
was crucial in the direction American education would take. 

Social Darwinism didn't last long. It had powerful aca- 
demic enemies like William James from the start, and the series 
of economic depressions which ended up with World War I (where 
the most fit, by Spencerian standards, were the first killed) 
did not bear out its predictive accuracy. From a biological 
point of view it was bad science (Lamarck was discredited and 
the idea of progress, an inexorable, historical, movement 
towards human perfection, is a thoroughly unscientific con- 

246 



cept) . Hitler continued on as an enthusiastic believer in 
Spencer and had a curious respect for the American-Spencerian 
solution to the Indian problem. Yet in the United States, 
Social Darwinism as an articulated and explicit social theory 
was dropped and forgotten. 

Yet Social Darwinism was not a fad. An intellectual fad, 
is by definition, an idea given immediate and enormous atten- 
tion and acclaim in intellectual circles which is never assim- 
ilated into the institutional structures of the culture. Marx- 
ism never got beyond the status of fad in the United States. 
As George Lodge points out in his book The American Ideology , 
no social idea in conflict with John Locke's has ever had any 
major structural or political effect on American institutions. 
But precisely the issue is that Spencer, at least superficially, 
seemed to present no major conflicts with Locke, no argument 
with private property, individual freedom, reason, or special- 
ization. The major conflict was not recognized. Locke (like 
John Adams) saw progress as towards a "steady-state" society 
reflecting the rule bound order of nature, "a government of 
laws." Spencerian thought was more dynamic and unconcerned 
with limits of any kind except the limits inherent in human 
competition. The Spencerian ideology penetrated deeply into 
American institutional life and quietly transformed many of 
its Lockeian assumptions. When it died as an explicit social 
theory, it lived on in the assumptions of our institutions, 
particularly in our industrial and educational institutions. 

247 



World War II brought a new urgency to the issue of human 
survival, and this time not as an abstract concept but as a 
hard, ugly reality. The Holocaust and the dropping of atomic 
bombs on Japan revealed that advances in science had catastro- 
phically extended human power. As Julian Huxley put it, "man 
had become evolution conscious of itself." Konrad Lorenz , an 
ethologist of international reputation, when asked why, as a 
young man, he had cooperated with the Nazis, explained, "When 
they spoke of 'selection', naively, I did not understand that 
they meant genocide." 

Along with the abrupt realization that humans could destroy 
their own species intentionally either selectively or once and 
for all came a slower realization that the "advances" in tech- 
nology emerging from a newly institutionalized corporate scien- 
tific effort, had their cosmic costs as well as their immediate 
local benefits and that humans were faced with what came to be 
called the "global crisis." 

The litany of cosmic threats (world hunger, depletion of 
nonrenewable resources, pollution of air and water, overpopu- 
lation and all the rest) became the daily fare of the mass 
media. The cultural atmosphere became anxious, and out of 
academia came theories like "triage" or the "life boat" con- 
cept. Lacking any philosophy beyond empiricism the West set 
the Global Crisis as a problem to be solved: "Who is to 
survive?" The first solution to emerge was that deeply buried 
in our institutions, "The most fit, of course." By this was 
meant the most intelligently aggressive, the most technologi- 

248 






cally advanced, those with the most sophisticated global strate- 
gies and those in control of the most resources. 

The question of selection arises again. It is perceived 
from a Social Darwinist perspective as the central issue of 
the last quarter of the 2 0th century. It is behind the cutting 
of social welfare programs, the reluctance to contribute to the 
World Bank or any form of non-military foreign aid. It accounts 
for the pathological growth in military budgets. 

The real danger of bio-engineering is not one of mishap or 
technical error. The real danger is that new micro-biological 
theory and technology are appearing in a world which is rapidly 
substituting a simplistic biology for cultures. Indeed, one 
could say that the issue is profoundly theological. God is of- 
ten seen as Evolutionary Biologist setting up our planetary ex- 
periment and watching with interest but objectivity as it sorts 
itself out. God's hunch is that it will work out well in the 
end, but if it doesn't, far be it from God to intervene. One 
hears both scientists and preachers referring to the "human 
experiment." Although God is not mentioned, one may presume 
that humans did not set up the experiment. 

Yet humans in positions of power, despairing of God's in- 
tervention, are not reluctant to intervene themselves. The 
holocaust was a phenomenon of bad biology. It was explicitly 
justified as a form of genetic purification, the first mass 
application of genetic theory to human subjects, the removal 
of an inferior race from the planet's gene pool. 

It is into a world inclined to think in these simplistically 

249 



biological terms that the new biotechnology is being intro- 
duced. It is not hard to imagine the uses to which this Bio- 
theology would have biotechnology put. One discovers them in 
the popular fantasies surrounding cloning, as well as in the 
already existing field of biological warfare. It may be that 
when scientists come to deal with such primordial material as 
genes, the "building blocks of creation", the metaphorical sig- 
nificance of what they discover will be more important than its 
technological application. Biology, whether it intends to or 
not, may be moving into theology. 




250 



THEOLOGICAL VIEWPOINTS 

Discussion Questions : 

1. How does Christian faith address human experiences of 
the perishing aspect of change? 

2. Is the survival mentality of John Snow's article on Theology 
and Culture an apt description of your experience as part 

of American culture? Give some examples from your background. 

3. Do you agree that the "real danger is that new microbiologi- 
cal theory and technology are appearing in a world which is 
rapidly substituting a simplistic biology for culture?" 

4. Are any of the views expressed in this session concerning 
the relation of theology or religion to science and tech- 
nology reflected in your views? Which statements are and 
which are not? 

5. Is your understanding of God and faith important in decisions 
about new developments in biology? How is it important? 

6. What kinds of things need to be done to further 
collaboration between science and religion? What is your 
responsibility in this effort? What outcomes are you pre- 
pared to live with concerning uses of the power we have to 
change ourselves and our world? 



251 



PART II 



KEY EVENTS IN RECENT HISTORY 
By: Colin B. Gracey and David A. Ames 

The formulation of the molecular theory of the genetic 
code provides a general theory of living systems. It is 
important for our knowledge of how living organisms repli- 
cate, develop and change. Some of the ramifications of 
this theory have been expressed in recent events. This 
survey takes a look at some of these events and their 
significance for the future. 

On the last day of February, 1953, in the Cavendish 
Laboratory at Cambridge University in England, James Watson 
fashioned a model of the macromolecule deoxyribose nucleic 
acid (DNA) . DNA is the molecule that carries and implements 
the instructions for generating living matter. Francis 
Crick, his collaborator, was as enthusiastic as Watson with 
the model because its form seemed to contain complete accuracy 
as an explanatory concept. The structure of DNA consists of 
a double helix which supports a sequence of chemically bond- 
ed steps, as in a ladder. This model turned out to be a 
breakthrough of major significance for modern science; it 
had fundamental importance for gaining access to the complex 
role of DNA as the chemical carrier of information or codes 
within a cell for the specifications of living organisms. 

The discovery would undergird advances in microbiological 
research and open the way to vast new possibilities of bio- 
technology by means of the ability to manipulate the functional 
units of DNA. These advances and possibilities, in turn, 

253 



would raise new questions for science, for society and for 
personal decisions. Modern science's move in the direction 
of providing humankind with gene-splicing technologies had 
taken a giant step forward. 

The importance of this discovery formally was acknowledged 
when Watson, Crick, and Maurice Wilkins, a scientist from 
King's College in London, shared the Nobel Prize in 1962. 

In the sixties, work on DNA and the science of micro- 
biology advanced with research and with additional discoveries. 
The ability to produce hybrid life forms by means of genetic 
rearrangement using techniques of recombination, to join 
different organisms for potentially therapeutic purposes, 
and to correct genetic defects emerged as new applications 
of biotechnology. A result was that certain segments of 
society perceived the future as both creative and uncertain. 
Specifically, spectacular hypothetical possibilities were to 
become associated with genetic engineering. They included: 

genetic screening 

gene therapy 

gene surgery 

gene manipulation 

creating new biotypes 

creating new human life forms 

cloning 

eugenics 
These possibilities were matched with a list of equally 
spectacular hypothetical dangers. A list of these, raised 

254 



both within and beyond the scientific community, included: 

cloning viruses 

recombinant of a common pathogen and tumor virus 

new types of hybrid plasmids 

spread of plasmids with R factors 

creating E. coli pathogens 

shotgun cloning mammalian DNA 

breaching species barriers 

autoimmune effects 

E. coli with troublesome proteins 

technological fix 

transmission of DNA from E. coli K12 to wild strains 

any gene can be harmful 

creation or enhancement of plant pathogens 

ecological consequences 

altering the course of evolution 

military misapplications -*- 

Some of the uncertainties have been or are being resolved, 
Some of the possibilities are becoming practical realities. Yet 
interest in and awareness of each change gathers a broader base 
of public involvement because the advance of the state of the 
art of biotechnology and genetic engineering poses ethical 
dilemmas never before confronted or considered, the resolution 
of which will affect the future of us all. 

This situation is defined by the discoveries that have 
been made during a period that Harvard historian Donald Fleming 
calls a "biological revolution." ^ Here is a score of things 

255 



that we have discovered in the last twenty-five years: 

1) the structure of the genetic material DNA-the double 
helix of Watson and Crick- and the code by which DNA 
specifies the insertion of amino acids into proteins. 

2) in viruses and bacteria how to achieve the perfect 
replication of DNA molecules that are biologically 
effective . 

3) as a result of the aforementioned ability to "clone" 
genes that the genes of higher organisms, in contrast 
to those of bacteria, often are punctuated by myster- 
ious gaps . 

4) the power of viruses to invade cells and to insert 
the genes of the virus into the chromosome of the host 

5) that the DNA, at least in the cells of higher animals, 
is not static. It undergoes rearrangements during 
the course of embryonic development and may do so in 
response to invasion by viruses; we have reason to 
conjecture that this phenomenon may be involved in 
cancer. 

6) how to produce in bacterial cells large quantitites 
of proteins (such as insulin and interferon) from 
plants and animals. 

7) that bacteria can be used to test chemicals quickly 
and inexpensively for the ability to cause certain 
kinds of genetic damage. 

8) how to produce hybrid cells between the most diverse 
verte.brate species, including hybrids between man and 

256 



mouse; some of these hybrids have gone on multiplying 
for several (cellular) generations. 
*9) hormonal contraceptives and grasped in principle the 
strategy for devising a contraceptive pill for both 
sexes, by knocking out certain hormones of the hypo- 
thalamus, the master sexual gland of the body. 

10) on a large scale in the livestock industry that deep- 
frozen mammalian sperm can be banked indefinitely 
and drawn upon as desired to produce viable offspring 

11) how to test the human fetus for certain genetic and 
physical abnormalities before the end of the second 
trimester. 

12) that it is possible to insert "foreign" genes (of 
viruses or of other species) into fertilized mouse 
eggs so that they become part of the developing 
individual's genetic makeup and are transmitted to 
subsequent generations. 

13) in humans how to fertilize eggs outside the body and 
how to achieve successful reimplantation so that in 
a substantial minority of cases a normal pregnancy 
follows . 

14) in rabbits how to regulate the sex of offspring by 
removing fertilized ova from the female before they 
become implanted in the wall of the uterus, "sexing" 
the embryos by a technique entailing the deletion of 
200 to 300 cells, flushing embryos of the "wrong" 
sex down the drain and reinserting embryos of the 
desired sex into the uterus. 

257 



15) in mice how to produce identical twins, triplets, 
etc. at will by separating the cells of very early 
embryos and reimplanting the single cells in surrogate 
mothers. These manipulations also can be used to 
combine cells from two different embryos, producing 
"tetraparental" offspring. 

16) drugs, above all the hallucinogens, that simulate 
psychotic states of mind; and have thereby rendered 
it plausible that the latter are the product of 
"inborn errors of metabolism" and as such remediable 
by the administration of drugs. 

17) a whole family of substances naturally occurring in 
the brain whose psychoactive powers may exceed those 
of synthetic drugs. 

18) in principle, and to a certain extent in practice, 

how to repress the immunological defenses of the body. 

19) conversely , how to manufacture outside the body large 
quantities of antibodies against almost any substance. 

•k 

20) a combination of immunological and surgical techniques 
by which the kidney, liver or heart can be transplanted 
with fair prospects of the recipient's survival for 
months or even years . 
An awareness of the need to proceed with care, to 
discuss issues and to have some formulation of guidelines and 
statements of social policy surfaced in the late sixties for 
major consideration in the seventies. The Institute of Society, 
Ethics and the Life Sciences, The Hastings Center, for example, 

258 






was founded in 1969 "to fill the need for sustained, pro- 
fessional investigation of the ethical impact of this bio- 
logical revolution." 3 The Kennnedy Institute followed with 
work along similar lines. 

In the seventies this need for serious consideration of 
the issues involved moved onto the agendas of key religious, 
scientific and governmental meetings. The history of these 
meetings discloses the roots of what has become a matter of 
world-wide interest in and public awareness of issues sur- 
rounding the unprecedented . developments in microbiology, 
biotechnology, and gene-spicing technology. 

A renewed concern for ethics emerged in relation both to 
medical care and the use of human subjects in biomedical 
research. Historical definitions of ethics were examined and 
new definitions were suggested. Much debate and discussion 
focused on the need for medical ethics and what an adequate 
ethics entails. Principles that had been expressed through 
the centuries in codes and oaths and writings by physicians, 
clergy and philosophers were considered anew and modified 
and expanded to meet present needs. These principles usually 
include some or all of the following: 

1. To do good- beneficence. 

2. To do no harm- nonmalef icence . 

These are ancient and fundamental. To preserve life and good 
health; to ward off illness, pain and death- these are the 
perennial tasks of physicians and health care providers. 

3. Equality- to treat the rich and poor, the ugly and 

259 



beautiful alike. 

4. Justice- to allocate justly the medical resources, 
costs and benefits, among the citizens of a community, 
the state, the world. 

5. Veracity- to inform patients truthfully about 
their condition and prognosis. 

6. Respect and Autonomy- to promote patient integrity, 
dignity, responsibility, welfare, rights, sanctity, 
love, and to involve patient participation when 
choice is available. 

7. Mutual trust- to promote a caring and cooperative 
relationship between providers and recipients. 

8. Thankfulness- to feel gratitude for the fact and 
gift of life. 

For the World Council of Churches, the year 1971 marked 
the occasion when ethical dilemmas and problem producing 
aspects of modern biology and biotechnology came to the atten- 
tion of the Council. This topic was part of a report titled 

"Science And The Quality of Life", 4 and became a major agenda 

5 
item at future meetings. 

Several World Council of Churches reports asserted that 
religious concerns and scientific interests are interwoven in 
the complex issues raised by advances of microbiology and bio- 
technology. Ethical issues in the biological manipulation of 
life centered upon the implications of advances in eugenics, 
genetic engineering, behavior control, the problem of scarce 
medical resources, and experimentation on humans and animals. 

260 



The reports also stressed the need for fresh theological 
reflection and articulation concerning the relation of God, 
humanity and nature from the perspective of faith. 

Within the scientific community, 1971 was the year 
when certain directions of molecular biological research 
caused the problem producing aspects of research to be placed 
on the agendas of meetings of molecular biologists. Recogni- 
tion of the need to explore potential dangers in research 
emerged from a workshop on laboratory safety at Cold Spring 
Harbor, Long Island. 

Significant questions about safety were raised and many 
scientists entered into vigorous discussion concerning various 
possible hazards. Here we shall note just a few of the meetings 
to provide a sense of the direction from the scientific 
community's involvement to public awareness of the issues. 

In January, 1973/ a group of research scientists met at 
the Asilomar Conference Center in Pacific Grove, California 
to discuss potential biological hazards in tumor-virus research 
and to assess their significance. 

By summer researchers had demonstrated the practicality 
of genetic manipulation and techniques of recombination. This 
was discussed at the Gordon Research Conference on Nucleic 
Acids held in New Hampton, New Hampshire in June, 1973. The 
conference generated an open letter requesting that the Nation- 
al Academy of Sciences establish a committee to study problems 
of recombinant DNA research and to recommend guidelines for 
protection against potential hazards. This letter was 

261 



published in Science in September of 1973. Its content 
and precautionary tone marked the dilemma that the advance 
of this research presented: 

Several of the scientific reports presented 
at this year's Gordon Research Conference... indicated 
that we presently have the technical ability to join 
together, covalently, DNA molecules from diverse sources. 

. . . new kinds of hybrid plasmids or viruses , with 
biological activity of unpredictable nature, may 
eventually be created. These experiments offer exciting 
and interesting potential both for advancing knowledge 
of fundamental biological processes and for alleviation 
of human health problems. 

Certain such hybrid molecules may prove hazardous 
to laboratory workers and to the public. Although no 
hazard has yet been established, prudence suggested that 
the potential hazard be seriously considered. ° 
The National Academy of Sciences responded by setting up 
a committee which met in April, 1974, at the Massachusetts 
Institute of Technology. The group, later to receive official 
status as the Academy's Committee on Recombinant DNA Molecules, 
proposed a voluntary deferral of certain types of experiments 
and the convening of an international meeting of involved 
scientists . 

The idea of a moratorium on certain kinds of experiments 
was presented at the European Molecular Biology Organization 
meeting in Belgium. Then a letter about the proposed moratorium 

262 



and the call for a meeting of scientists was published in 

Science and in the British scientific publication, Nature , 

7 
in the summer of 1974. 

In England, in response to the letter, a committee was 

formed which held hearings "to assess the benefits and 

hazards of techniques which allow the experimental manipula- 

o 

tion of genetic composition of microorganisma. " This 
committee, known as the Ashby Committee, made its report to 
Parliament in January, 1975. 

In November, 1974, the National Institutes of Health 
in Washington created the Recombinant DNA Molecular Program 
Advisory Committee. It would begin work on refining guidelines 
for molecular research following recommendations from the 
International Conference of Molecular Biologists held in 
February, 1975 at the Asilomar Conference Center. 

This Asilomar Conference bore the full weight of the 
dilemma of the responsibilities that scientists have for the 
integrity of scientific research and their responsibility to 
the larger society. The Conference moved to end the morator- 
ium on certain types of experiments providing "the scientific 
work could be undertaken with minimal risks to workers in 
laboratories, to the public at large, and to the animal and 
plant species sharing our ecosystem. . . . (and) that most of 
the work on the construction of recombinant DNA molecules 
should proceed, provided the appropriate safeguards, principally 
biological and physical barriers adequate to contain the 
newly created organisms, are employed." ' The Conference also 

263 



defined possible levels of containment, described what each 
level might involve and listed types of experiments appro- 
priate to each level of containment based on an estimate of 
risk. Thus, certain principles for setting forth guidelines 
for future experimental research evolved to address the 
problems of potential hazards connected with ongoing biologi- 
cal research while at the same time enabling the research to 
continue. 

In June, 1976, a set of guidelines was published by the 
National Institutes of Health for the conduct of experimenta- 
tion. Basic research in microbiology contained many unknowns 
and some potential dangers, not the least of which was the 
danger of accidents releasing into the environment harmful 
organisms which could neither be contained nor destroyed. 
The guidelines were designed to set reasonable controls in 
place. These would be revised in 1980. 

Public awareness and demands for governmental involve- 
ment at local, state, and federal levels grew as the basic 
ethical, political, economic and social questions about 
recombinant DNA research were debated. State legislatures 
held hearings concerning the regulation of research. 

Universities questioned whether this type of research 
ought to proceed in a particular place and whether to allow 
the building of special laboratories for recombinant DNA 
research. The underlying question concerned more than the 
specifics of safe research procedures. It concerned their 
effects upon society itself and for the future of both society 

264 



and the ecosystem. 

In 1980, the general secretaries of the National Council 
of Churches, the Synagogue Council of America, and the United 
States Catholic Conference expressed concern to the President 
that "no governmental agency or committee is currently ex- 
ercising adequate oversight or control, nor addressing the 
fundamental ethical questions of (genetic engineering) in a 
major way. 11 10 In July, 1980, the President's Commission for 
the Study of Ethical Problems in Medicine and Biomedical 
and Behavioral Research took note of this concern and decided 
to explore the issues and implications of genetic engineering 
beyond those which involve the biohazards of laboratory 
research and industrial development. The study culminated 
in a report on the ethical and social implications of genetic 
engineering titled. "Splicing Life." 

Imbedded in other reports within the government, from 
the Office of Technology Assessment and from the Subcommittee 
on Science, Research and Technology of the Committee on Science 
and Technology of the House of Representatives, were comple- 
mentary suggestions. The Office of Technology Assessment 
report stated: 

As scientific understanding of genetics and the 
ability to manipulate inherited characteristics develops, 
society may face some difficult questions that could 
involve trade offs between individual freedom and the 
needs of society. This will be increasingly the case 
as genetic technologies are applied to humans. Develop- 
ments are occurring rapidly.... Therefore, some action 

265 



might be taken to better prepare society for decisions 
on the application of genetic technologies to humans.... 
A commission could be established to identify central 
issues, the probable time frame for application of 
various genetic technologies to humans, and the probable 
effects on society, and to suggest courses of action. 
The commission might also consider the related area 
of how participatory democracy might be combined with 
representative democracy in decision making. 
The House Subcommittee on Science and Technology report stated 
Past debates on the NIH recombinant DNA research 
guidelines show the deep feelings on this issue that 
are exhibited by the public at large. Lay citizen 
involvement in the advisory bodies on research guide- 
lines has been effective and responsible, contrary to 
the fears of some that citizen involvement would 
thoughtlessly impede progress in the biotechnology 
field. 

Now, poised on the brink of application of much of 
this knowledge and viewing with excitement the promise 
that bioprocessing holds, we are faced with the need 
to engage in a wider discussion. Scientists and policy- 
makers must insure that this discussion is an informed 
debate including all of the viewpoints on the issue. 
The public must be better educated on biotechnology and 
its applications. To fail to do so now will only create 
problems later, as the nuclear industry has belatedly 

266 



discovered .... 

Having been through many of these some issues in 
earlier examinations of recombinant DNA research, some 
people are reluctant to open the discussion again. But 
we are dealing now with different facets of the earlier 
issues, ones with a much wider potential societal 
impact. . . . 

This Subcommittee will continue to monitor develop- 
ments in bioengineering closely.... 

But monitoring by this Subcommittee, or by any of 
the elements of the Congress, will be fragmentary and 
largely reflect jurisdictional concerns. There is much 
merit to the idea of establishing a panel of people 
representing all of the elements and viewpoints involved 

in this policy debate to provide a forum for discussion 

12 
and to monitor developments on a continuing basis. 

So it is that the realities of biotechnology and genetic 
engineering offer vast new powers to human beings to change 
themselves and to shape their future. How to decide what to 
do with new discoveries and capabilities is one of the central 
challenges of our time. 

If the fifties marked a revolutionary breakthrough in 
modern biological theory, the sixties witnessed the rapid 
development of basic research. The seventies raised serious 
questions concerning potential dangers of ongoing research 
and development, particularly in recombinant DNA technology. 
There was also a growing awareness of ethical, political, 

267 



economic, legal and social issues associated with the direction 
of the microbiological sciences and biotechnology. The 
eighties and beyond will reflect how society copes with 
science and science with society. Both will have to grapple 
with the promises and perils of entering new times with ever 
growing knowledge and capabilities and an ever growing aware- 
ness of uncertainty. Humanity now has powers over bioprocesses 
that are without precedent in human history. 

As a result of these key events in recent history, in 
the spring of 1981, the Episcopal Church asked the Diocese 
of Massachusetts to participate in producing an adult study 
guide., for use in churches around the country on the new biology 
and its ethical implications. An interdisciplinary group 
from the university, medical, seminary and church communities 
convened to work on an agenda for such a guide. This book 
reflects the deliberations of our Biotechnology Study Group. 
Its purpose is to increase church and public awareness of 
the issues in biotechnology, and to support free and open- 
ended discussion of the significance of the new biology for 
the future. The editors hope that those using this study 
guide will enjoy as rich an experience as did our Study Group. 

References 

1. Krimsky, Sheldon, Genetic Alchemy , The MIT Press, Cambridge, 
1982, pp. 376-7. 

2. Fleming, Donald, "On Living In A Biological Revolution," 
The Atlantic Monthly, February, 1969, p. 64-5. (Note: 

268 



Fleming listed a dozen discoveries up to 1969. Items 
from his list are noted with an asterisk. This list was 
updated and expanded by the Study Group. 

3. The Hastings Center Report , Volume 11 Number 2, April, 
1981, Cover. 

4. World Council of Churches, Study Encounter Report, 
Science And The Quality Of Life , 1971. 

5. The meetings referred to include: 

1. Consultation on Genetics and the Quality of Life, 
Zurich, 1973 

2. The WCC Assembly Meeting, Nairobi, 1975 

3. The Faith, Science and The Future Conference, 
Cambridge, Massachusetts, 1979 (Note: The report 
by scientists, ethicists and theologians is 
titled "Ethical Issues in the Biological Manipula- 
tion of Life" and is part of the Conference report.) 

4. Work group report titled "Ethical and Social Issues 
In Genetic Engineering and the Ownership of Life 
Forms" from meeting in Voelenzang, Netherlands, 1981 

6. Singer, M. and Soil, D., "Guidelines for DNA Hybrid Molecules." 
Letter to the Editor, Science , 21 September 1973, p. 1114. 

7. Berg, P., et al ., "Potential Biohazards of Recombinant DNA 
Molecules." Letter to the Editor, Science , 26 July 1974, 
p. 303. 

8. Ashby, E., et al., "Report of the Working Party on the 
Experimental Manipulation of the Genetic Composition of 
Microorganisms." Reported to Parliament, January, 1975. 

269 



9. Berg, P., et al., "Summary statement of the Asilomar 
Conference on recombinant DNA molecules." Proceedings 
of the National Academy of Science, U.S.A., Vol. 72, 
no. 6 (June, 1975) . 

10. Letter to the President, June 20, 1980. 

11. "Impacts of Applied Genetics" Microorganisms of Plants 
and Animals, Congress of the United States, Office of 
Technology Assessment, 1981, p. 264. 

12. "Genetic Engineering, Human Genetics, and Cell Biology" 
Evolution of Technological Issues: Biotechnology 
(Supplemental Report III) . Report prepared for Sub- 
committee on Science, Research and Technology of the 
Committee on Science and Technology, U.S. House of 
Representatives, 96th Congress Second Session by the 
Science Policy Research Division, Congressional Research 
Services, Library of Congress, Serial DDD, August, 1980, 
pp. xi , xv, xvi . 




270 



BIOTECHNOLOGY STUDY GROUP AND PROFILE STATEMENTS 

The following list of people participated in a series 
of monthly meetings during 1982 for the purpose of setting 
the agenda and discussing many of the important issues pre- 
sented in this book. The editors thought it would be useful 
to include statements from each of them concerning their 
experiences of interdisciplinary consideration of the issues. 
We asked them to write from the perspective of their special 
discipline and personal values. Some had particular interests 
which led them to accept the invitation to participate in our 
study group. It is a joy to include their profile statements 
because of their variety and for the enrichment of your 
experience in using this curriculum. 

The Biotechnology Study Group members were: 

The Rev. David A. Ames, M.Div., Episcopal Chaplain 
at Brown University and the Rhode Island School of Design. 

The Rev. J. Daniel Burke, M.Div., Rector, St. Martin's 
Church, Providence; former Chaplain and Director of Human 
Values and Ethics Program, University of Michigan. 

The Rev. Charles A. Cesaretti, Th.M., Ph.D., Public 
Issues Officer, The Episcopal Church Center, New York. 

Philip A. Drinker, Ph.D., Senior Associate In Surgery 
(Bioengineering) , Harvard Medical School; Chief, Department 
of Biomedical Engineering, Brigham and Women's Hospital; 
Former member Cardiology Advisory Committee, National Heart, 
Lung and Blood Institute. 

Colin B. Gracey, S.T.B., Episcopal Chaplain 
at Northeastern University. 

271 



Tracy A. Gross Lugo, Ph.D., Research Fellow, University 
of Southern California Medical School. 

Charles Holt, Ph.D., (deceased), Biologist, Massachusetts 
Institute of Technology. 

Nancy Hopkins, Ph.D., Professor of Biology, Massachusetts 
Institute of Technology. 

Sheldon Krimsky, Ph.D., Associate Professor Urban and 
Environmental Policy, Tufts University; Former Member of the 
Recombinant DNA Advisory Committee of the National Institutes 
of Health; Consultant for Presidential Committee. 

James P. Lugo, Ph.D., Research Fellow, California 
Institute of Technology. 

Scott Paradise, B.D. , Episcopal Chaplain, Massachusetts 
Institute of Technology. 

Edward W. Rodman, M.Div. , Canon Missioner to Minority 
Communities, Episcopal Diocese of Massachusetts. 

Stephen R. Scher, Ph.D., J.D., Adjunct Assistant Professor 
of Public Health, Boston University School of Medicine. 

Robert A. Shepard, Ph.D., Professor of Chemistry, 
Northeastern University. 

John H. Snow, M.A. , B.D., Professor of Pastoral 
Theology, Episcopal Divinity School, Cambridge, Massachusetts. 

M. Jeanne Sproat, M.A., M.Div., Canon Chaplain for 
Hospital Ministries, the Episcopal Diocese of Massachusetts. 



272 



PROFILE STATEMENTS 
by: J. Daniel Burke 

"At various times in the past and in various different 
ways, God spoke to our ancestors through the prophets; but 
in our own time, the last days, he has spoken to us through 
his Son, the Son that he has appointed to inherit everything 
and through whom he made everything there is." (Hebrews Is 1-2, 
Jerusalem Bible) 

God has this habit of communicating with us. The exercise 
involved in discerning and responding to this communication 
from age to age is what life is all about. That, I think, is 
a fair representation of the biblical outlook on the world 
so ably summed up by the author of the letter to the Hebrews. 

In our own (i.e., 20th century) time, the last days 
(possibly in more ways than one), God is speaking, some might 
even say shouting, to us through the media we label as science 
and technology. A theological outlook on life requires us to 
say that neither science nor technology nor any other human 
enterprise is finally comprehended as an end in itself. It 
may look or act or even advertise itself as independent or 
unrelated to other activities, but everything there is has a 
common ground. Whether intentionally or not - and, alas, all 
to often our intention is otherwise - everything there is is 
under the rule or control or, as it is said, the kingdom of 
God. The message of the Christian faith is that the definitive 
statement of this has been made in the one designated as God's 
Son, the one appointed to inherit everything. 

273 



So for those of us who wish to take this faith seriously 
there is no turning away from the present order. That kind 
of escapism scants the gospel. It is in and through the 
present order the one who made everything there is chooses 
always to communicate with us. 

With respect to the biological sciences and technologies, 
as with respect to anything else, if I want to know what 
God is saying or doing in it, I must first understand what 
the practitioners are saying and doing in it. In realms such 
as genetics and ecology what this adds up to is the human race 
taking an intentional, indeed a definitive hand in the evolu- 
tion of species and the management of environments. It is an 
event of incalculable magnitude. Before it is over it will 
have forced us to re-examine our most basic values. 

Apparently it is time for the human race to take on this 
responsiblity . We may wreck things even with this knowledge; 
it would appear we were assuredly on the way to doing so with- 
out it. 

The religious community which has as its central value the 

loving or paying attention to God simply must look for the 

expression of divine purpose in this biological revolution 

even when that means letting some other values fall where they 

may. Whatever shape God's purpose is discerned as taking it 

will not, however, alter or excuse us from ordering it 

according to the dictates of the second prime value, that of 

loving or paying attention to our neighbor as carefully as we 

do ourselves. We neither can nor will ever get any more human 

than that . 

274 



by: Charles A. Cesaretti 

Recombinant DNA . In vitro or in vivo fertilization. 
Somatic cells. Bacterial plasmids. Amniocentesis. Zygota. 
These are not terms common to my vocabulary or ones I hear 
in the church circles in which I move. And, I have come to 
realize, these are not common to most people's daily conver- 
sation. Frankly, there's no reason why I should or need to 
know these terms or feel guilty about my ignorance. I'm not 
a scientist or a doctor. I'm a priest and more comfortable 
with terms like: hope; healing; life; values; truth; good. 

First it was the TV news about "test tube" babies; then, 
it was the news magazines about "gene splicing"; then, reports 
of university professors setting-up corporations, patenting 
bioengineering processes and organisms. Visions of Buck 
Rogers; 198^ ; Dr. Frankenstein; Brave New World ! And, of 
course, Galileo! The great promises, the great experiments 
and successes, the bitter-sweet fruits of science; and, the 
oft-times failures, misunderstandings and plain, simple fear 
and suspicion. Every new article, news report, commentary 
or editorial evoked anew the history of the interrelationship 
of the "new" sciences and the "classical" disciplines. No 
matter what your schooling, what your profession or what 
your perception of science may be, the very nature of the awe- 
inspiring horizon of science impacts every aspect of con- 
temporary life. 

It was not until Bishop John Coburn of Mass. challenged 
me, as Public Issues Officer of The Episcopal Church, that I 

275 



was to face, address and integrate the issues commonly called 
"genetic engineering." Bishop Coburn comes from a community 
awash with academic, scientific, business and religious 
institutions: Boston/Cambridge. Bishop Coburn also comes 
from a background as parish priest, urban worker, seminary 
dean, President of The Episcopal Church's General Convention 
House of Deputies, author and, now, Bishop of the Diocese of 
Mass. This alert, sensitive and sensible man was concerned 
that the religious community, and The Episcopal Church, in 
particular, be informed, engaged and professional in its 
relationship to and with the scientific community around the 
issues of biotechnology. To enhance and expand the dialogue, 
Bishop Coburn convened and sponsored an >■ interdisciplinary . 
working group of physical scientists, social scientists and 
theologians. He invited me to be a part of this group and 
my learning, frustration, anxieties and awe have been fostered, 
engaged and expanded. 

My greatest discovery has been the humanity, profession- 
alism and integrity of the scientific community. As we discussed 
gene therapy, genetic screening, biohazards, new life forms, 
cloning and duplication of human beings, implications for 
biological warfare and eugenics, we found ourselves opening 
the doors of discovery for each other. As we explored the 
content of this new and expanding science, we also explored 
the context of values: personal safety, future generation 
implications, patient rights, appropriate interventions and 
the constant pull of risk taking. We shared the great hopes 

276 



and expectations of cures for cancer, sickle-cell anemia 
and genetic defects; and, we shared the problems of demonic 
genetic engineering, biological warfare, undisciplined 
experimentation and financial exploitation. In fact, I found 
we really were using my vocabulary: hope; healing; life; 
values; truth; good. 

In answering many of my questions about biotechnology and 
introducing me to a new discipline, the eighteen-month long 
process of dialogue also opened up for me many areas for study, 
thought, reflection and response. At the moment I can only 
list the areas: 

1. How does the accelerated pace of science relate to 
other areas of knowledge? 

2. What context is necessary to create the conditions for 
"good" science? 

3. Is there a growing tension between nature as subject 
or nature as object? 

4. What criteria guides and governs the authority for 
scientific experimentation? 

5- Who benefits from the scientific-technological enterprise? 

6. Is it true that the power to create is also the power 
to destroy? 

7. What are the implications of Social Darwinism? 

8. What social, cultural context creates and nourishes the 
scientist? 

9. How does science create and nourish society and culture? 
10. Is there a future for religion in the new scientific age? 

277 



by: Philip A. Drinker 

My own area of activity, Biomedical Engineering, has led 
me to confront directly ethical issues of medical research 
carried out as part of a patient's care. When are exper- 
imental approaches appropriate in a final effort to save 
a life? How can we prove (or disprove) the efficacy of a 
new treatment in the life/death setting of critical care? Is 
withholding a specific treatment to obtain control data 
permissible? Is there a distinction between experimenting 
for and experimenting on a patient, and if so, how is the 
dividing line established? 

These concerns can be viewed from different perspectives. 
To me they are human concerns, based on personal conviction; 
they grow from the "caring" part of care. 

The Biotechnology Study Group was convened for the 
purposes of exploring the implications to humanity -- and the 
potential ramifications -- of applied genetic science. This 
new science and technology may extend beyond treatment of 
congenital diseases and abnormalities; it could also reshape 
human destiny through the elimination of certain disorders 
and/or the enhancement of selected characteristics. The major 
focus of the Group's efforts has been on questions that are 
primarily matters of social policy and public health, rather 
than on issues having the immediacy of the individual patient 
in the intensive care setting. Nonetheless these two areas -- 
future applications of Genetic Science and current critical 
care practices -- do generate many similar concerns, particu- 
larly in view of the fact that as "future" techniques are 

278 



reduced to practice the individual rill emerge as I dcus 

of concern. Efforts s*- : ?.s : ::se .- ' . e St /. v 
ultimately lead to a balanced and reasoned o I a i aeds 
of the individual . 

The assemblage of talents and personalities . :e 
Biotechnology Study Group produced sessions 
and helpful in that basic and still unresolved problems 
reexamined, cast in the varied perspectives of . . .-roup s 
members — religion, ethics, and the science:-. My c-*. \ 
criticism of the project is that :'■•./ proceedings were 
realistically harmonious i and as a result t not as Incisive as 
they could have been. They lacked a sp t of contei 
debate that could have offered more timulatnu\ 
lectual exercise; such debate would have been wholly real 
and appropriate In our work, because society will Inevitably 
react contentiously bo issues exposed by the new bio technology . 

The essential question fee me centers en the issue e 
the "oiif'Jiliu':::-," in research and in the application of the 
findings of discovery. The proponents of research and iu>\a 
mcthodo 1 o, ,r . ies of b i o t.eehne 1 or.y nuist be very clear in ostabli: 
in,", the appropriateness el* their work, because failure to de 
so can only lead to ambivalence in society's reaction to 
pro/'. rrr.ii . 



.'/•> 



by: Tracy Gross Lugo 

My motivation for joining interdisciplinary discussions 
about the moral implications of science arises from the fact 
that I am both a Christian and a scientist. As a Christian, 
I would like to understand what it means to serve God in 
the context of my vocation, as well as in worship and in 
family life. My traditional upbringing in the Church included 
very little instruction in this area, and I have been delighted 
to find eventually fellow Christians who feel that science 
deserves to be examined from the standpoint of faith. I have 
also come to see that dialogue with non-scientists is in my 
interest as a scientist. From time to time I have been con- 
fronted by people who have grave anxieties about science. Some 
were troubled by particular technologies or lines of research, 
while others went so far as to indict science for most of our 
civilization's flaws. Nothing in my scientific training had 
prepared me to answer* such charges. Over the course of several 
discussions, I have now learned to share certain fears about 
the present course of science. On the other hand, I have also 
found that many of the images people use to think about science 
bear very little resemblance to my daily experience in the 
laboratory. 

One of the principal merits of interdisciplinary discussions 
is the opportunity for the participants to examine these 
images and compare them with the stories each person has to 
tell about his or her own experience with science. Another 
kind of enrichment occurs when each person shares some of his 

280 



or her own mode of thinking and specialized vocabulary so 
that it becomes group property. (Speaking as a scientist who 
has occasionally been mystified by references to obscure -- 
at least to me -- theological concepts, this effort demands 
a certain tolerance for frustration.) A very important form 
of growth occurs when participants overcome the def ensiveness 
which is a natural emotional reaction to the discomfort of 
coping with unfamiliar words and ideas or having one's 
assumptions challenged. 

Like most of my colleagues, I regard science as a cons- 
tructive and creative human activity, which is a source of 
fulfillment for those who practice it and technological 
benefits for society at large. But, again like many of my 
colleagues, I accepted these notions much too uncritically. 
Now that I have been called upon to defend them, I see that 
the connection between the scientific enterprise and the 
common good is often problematic. A good interdisciplinary 
discussion, including people from many kinds of backgrounds, 
will not only help the participants think through this 
connection more clearly in the light of specific issues, but 
will also foster a level of mutual understanding and apprecia- 
tion between scientists and non-scientists that is difficult 
to achieve in any other setting. 



281 



by: Nancy Hopkins 

I am a molecular biologist. Originally my drive in 
this field came from a desire to elucidate causes and cures 
of human disease. But at least as strong a motivation now 
is my belief that the desire to understand nature is part 
of being human and that the ability to do so is one of our 
more spectacular attributes. The accomplishments of molecular 
biology today are awesome, splendid, truly beautiful. Perhaps 
33 think too little about the potential evils of science 
or the moral dilemmas it may pose for society. For this 
reason I joined the Biotechnology Study Group, curious to 
listen to experts in this area. I also joined in order to 
contribute scientific information: what is really possible 
now or soon, what is merely science fiction. I found the 
diversity of views and expertise represented in the group 
fascinating. (Incidentally, I am an atheist, meaning only 
that I don't £eel a need to find answers to questions that 
I believe can't be answered.) 

I think it is very difficult to teach enough science to 
nonscientists so that they can make truly informed decisions 
about the implications of new discoveries. However, there is 
a great need now for molecular biologists to try to explain 
the implications of their work. If they fail to do so, we 
run the risk of having ungrounded fears and suspicions 
inhibit what I see as one of the more spectacular developments 
in our intellectual history. 



282 



by: Sheldon Krimsky 

Bio-ethics as a systematic study is still in its infancy. 
It is barely two decades old. Some view it as a subbranch 
of philosophy. Others consider it a part of theology or 
social ethics. Still there is a third group that looks 
toward bioethics for prescriptive knowledge to guide social 
policy and professional behavior. 

When these groups interact we can begin to understand 
the contributions and limitations of the different approaches 
to the subject matter. I would like to share the insights 
I gained from my participation with the Biotechnology Study 
Group. I place myself in the third category of interests in 
bioethics although I was trained in classical and modern 
philosophy, and only subsequently turned toward an interest 
in science and public policy. 

It became clear during our discussions that the philo- 
sophical approach to bioethics has little to contribute to 
the resolution of concrete bioethical problems. What 
philosophy does offer us is theoretical vocabulary, moral 
justifications, and in Kurt Baier's words "the moral point 
of view." Philosophers seek broad general principles which 
illuminate individual choices and behavior. The application 
of general principles is predicated upon the background infor- 
mation related to specific circumstances. A strength of the 
philosophical perspective is its emphasis on unity, coherence 
and consistency of thought. By unity I mean that individual 
choices derive from broad principles (egoism, utilitarianism, 

283 



Kantianism). In striving for coherence, philosophers seek 
to systematize moral precepts. The difference between a code 
and a moral theory is that the latter forms an integrated whole 
and provides a framework for making rational moral judgments. 
Philosophers also strive toward a consistent treatment of 
similar ethical problems. Logical consistency is the corner- 
stone of philosophy and applies no less to ethical theory. 

The theologian offers another approach to the problems 
of bioethicsi Individuals trained in theology are in a 
position to examine the potential conflicts between religious 
and scientific values. Religious doctrine is a vehicle through 
which cultural values are preserved and transmitted to future 
generations. Concepts of the individual, sexual identity, the 
family, and the community are an important part of theological 
writings. Technology can refashion the social fabric of a 
culture slowly transforming traditional relationships and re- 
arranging priorities. The theologian can alert us to the 
tensions and conflicts between traditional values and modern 
technologies. We can look within theological writings for 
insights about what it means to be human, about the sanctity 
of life, about freedom, about full personhood, about man's 
relationship to a creator. These notions can serve as guide- 
posts against which ethical problems can be judged. From my 
point of view, the value of the theological perspective goes 
beyond this or that theology, but in so far as it identifies 
deeply rooted values -- those that form the cultural landscape 
of human civilization. 

284 



The third approach to bioethics looks at specific 
problem solving and policy outcomes. It is not beyond the 
influence of philosophers and theologians but it frames a 
different set of concerns and priorities. Of fundamental 
importance is how does an ethical problem become translated 
into a policy solution. The following are several types of 
questions highlighted by this approach. What institutions 
do we have through which individual bioethical problems can 
be resolved? Are these institutions adequate? If not, what 
changes ought to be made to improve the decision-making 
process? When should a bioethical problem be left to a 
single individual? When does it become the province of a 
larger body? When is a problem too hypothetical (not upon us 
or too far in the future) to warrant a public policy response 
at this time? What issues of social justice and fairness enter 
into a bioethical problem and are these factors accounted for 
in the institutional forms through which the problems are 
resolved? 

These queries emphasize the pragmatics of bioethical 
decision-making. They guide us between the ideal world and 
practical realities. To illustrate the three perspectives, 
consider the question: Should any limits be established in 
applying genetic engineering to humans? The philosophic 
approach provides an Inventory of human genetic engineering 
types and explores the morally relevant differences between 
these forms of medical therapy and human intervention and more 
conventional forms. The inventory may include genetic manipu- 
lation in the person, in cell culture, affecting the germ line, 

285 



or in non-germ line cells (somatic cells). The philosopher 
may point out principles that are relevant to such decisions: 
irreversibility of effect; potential harm to future generations; 
rights of privacy; therapeutic vs. cosmetic uses of genetic 
engineering; informed consent. The theologian, on the other 
hand, may approach the same issue by appealing to some general 
moral standards against which the new technologies should be 
judged. With what widely held cultural or religious values 
does the new technology conflict? Does it debase the dignity 
of persons? Does it threaten the concept of the family? 
Does it contribute to a loss of personal identity? 

The public policy orientation asks what current institu- 
tional frameworks are currently in place to respond to requests 
to perform human genetic engineering experiments. Why shouldn't 
human genetic engineering be treated like any other human 
experiments? We already have an elaborate system of institu- 
tional review boards to review experiments on human subjects. 
Are there specific reasons why new institutional safeguards 
should be established before we permit human genetic engineering 
experiments? 

Each of these approaches contributes something important 
to the problem at hand but is limited in some important respect. 
Perhaps the theological approach, more than the others, is 
more equipped to raise ultimate questions about forbidden 
knowledge or abolition of certain technologies. The policy 
approach, having a closer link to "realpolitik" is more inclined 
to ask: Is this an actual or hypothetical problem? 

286 



by: James P. Lugo 

My reasons for joining this interdisciplinary discussion 
group on bioethical issues are two-fold: 

First, as a scientist I am concerned about the inappro- 
priate use of science and technology to cure our social ills. 
This concern arises from my perception that our society for 
the most part tends to see science and engineering as panaceas 
and its practitioners as omniscient. This misunderstanding 
leads to unreasonably high expectations, resulting in consistent 
disappointments and anxiety about science. It also trivializes 
the scientific profession and encourages the search for quick 
technological "fixes" for many of our complex political and 
social problems, oftentimes at the expense of more difficult 
but longer-lasting political and social remedies. Inter- 
disciplinary discussion groups like our bioethics study group 
help to correct such misunderstandings by encouraging dialogue 
between scientists and non-scientists. Such contacts help 
each of the groups involved to understand better each other's 
concerns and perspectives. Moreover, these groups help to 
create informal networks which provide scientists and non- 
scientists alike with a basis for continued trust and cooperation 

Second, as a Christian I would like to know what it means 
to serve God in the context of my worship and work. The 
juxtaposition of my faith and science raise issues that my 
previous religious and secular educations had not adequately 
addressed. As a result, I oftentimes find myself questioning 
the validity of religious faith and its relevance to this 

287 



technological world. Interdisciplinary groups such as this 
allow me, and others like me, to confront these dilemmas in 
an atmosphere of Christian fellowship and reconciliation not 
possible elsewhere. In fact, it was precisely this kind of 
atmosphere, I believe, that sustained our bioethics study 
group as we attempted to understand, however slightly, the 
various issues presented in this book. 




288 



by: Scott Paradise 

With the words of Studdert-Kennedy echoing in my ears: 
"The blending of the sacred and the secular is the heart of 
all true religion" I have spent my adult life with one foot 
firmly planted in secular institutions and the other in the 
Church. As my locus moved from industry to MIT the center of 
my attention shifted from the meaning of faith in the industrial 
environment to its relationship to science and high technology. 
In our society as never before the secular and the sacred are 
far apart. How can the claims of God be understood in secular 
terms? In secular environments the Gospel is generally totally 
ignored or grossly misunderstood. To avoid these two traps 
careful study and humble listening are required on both sides. 
. The merit of the kind of exchange explained in this 
project is the opportunity for the meeting of candid tongues 
and open ears of those with primary commitment to science on 
the one hand and on the other to theology and ethics. Far 
more understanding can grow from discussion over ravioli than 
from thunder bolts hurled across a chasm. 

And better understanding is needed if the advance of 
science is not to result in our progress toward dehumanization. 
But what insights of the faith are important and relevant to 
the development of biotechnology? How can they be interpreted 
so they make such compelling sense that the science is so 
developed and applied that the human enterprise is advanced? 



289 



by: Edward W. Rodman 

In the fifteen years that I have been a priest, few 
experiences have been as rewarding and invigorating as parti- 
cipating in the Biotechnology Study Group. As most lay people 
in this field, I had a passing acquaintance with some of the 
basic concepts that the breakthroughs in this area have 
received over the past five years, but in fact had very little 
conception of the significant ethical questions that are raised 
not only by these advances, but by the very nature of the 
research itself. 

As a polio victim in early childhood, I have had more than 
a nodding acquaintance with the whole question of how hospitals 
and their medical research arms operate, and indeed, generally 
have a healthy respect both for the practice and the research 
that they carry on to improve the quality of life for all of us 

At the same time, as a Black person growing up in America, 
I have been painfully aware of the inequities involved in the 
delivery of these health services to the entire population. 
As a priest who has focused his ministry on urban problems 
and social justice, I recognize on a first hand basis the 
profound impact that the medical scientific complex has on a 
city such as Boston both in terms of its positive prestige 
and its negative contribution to urban dislocation. So it was 
with mixed feelings that I initiated my participation in this 
group, being concerned obviously to focus on the implications 
of this research and activity for poor people and minorities 
in our society. 

290 



It troubles me therefore, that the society has not caught 
up with these advances, and established the kind of boundaries 
of expectation and control that are clearly needed if we are 
properly to benefit from the progress being made through this 
dynamic but troubling research. Thus, it would be my hope, 
as I am sure it is of the other participants, that this study 
will increase the knowledge and awareness of concerned people 
throughout the Church in this area and further increase the 
level of the dialogue to the point that science and religion 
can in fact work together to do what is best for the future 
of the human race. 

In conclusion let me add that this is one of the few 
times in the past several years that I have been involved in 
an activity that clearly has so much hopeful potential for 
positive impact, and therefore feel especially grateful to the 
National Church and to our fellow participants in this project 
for the opportunity to be associated with them. 



291 



by: Stephen R. Scher 

Recent developments in biotechnology present complex 
problems for our society and for ourselves as individuals. 
These problems have many components, including scientific, 
social, political, legal, moral, and religious ones. Each 
person, however, tends to focus on certain components as 
centrally important or interesting; as a moral philosopher, 
for example, I am particularly intrigued by the moral 
problems resulting from developments in biotechnology. But 
these developments are too complex -- and too challenging 
to our traditional assumptions about human life -- to be 
understood solely from the perspective of one person or one 
academic discipline. 

It is comforting to think of our moral traditions, whether 
secular or religious, as stable and unchanging frameworks 
capable of guiding us through each new moral conflict or 
perplexity. These traditions have evolved, however, in 
response to the specific problems of each historical and 
cultural period. Recent developments in biotechnology challenge 
-- indeed, undermine -- some of the most basic assumptions 
implicit in our moral traditions. Historically, each human 
life has had an immutable natural history: conception, gestation, 
birth, infancy, childhood, maturity, senescence, and death. 
And each human life is marked by periods of health and illness. 
These natural facts of human life are deeply imbedded in 
such social institutions as marriage, the family, education, 
and health care. However, recent developments in biotechnology 

292 



have altered, and will continue to alter, these facts of 
human life. 

Biotechnology has provided us with unprecedented 
capacities to plan, modify, design, and prolong human life. 
We are capable of manipulating genetic material. We are 
becoming increasingly able to sustain the lives of remarkably 
immature infants. At the other end of the life span, we are 
able to sustain the biological life of dying persons almost 
indefinitely. The moral problems we now face concerning 
birth and death could not have arisen except in the context 
of recent biotechnological developments. These are new 
problems requiring much discussion and creative moral analysis. 

Developments in biotechnology have given us -- both as 
individuals and as a society -- increased power to control 
and manipulate human life. Just how this power is used 
remains an open question. It may be used well or poorly. 
It may promote the quality of human society or undermine our 
basic social institutions. Each of us has a moral responsibility 
to become and remain informed. It is not just scientists, but 
we as citizens, who should determine the future direction of 
biotechnology . 



293 



by: Robert A. Shepard 

As a facilitator and encourager of young minds coping 
with chemical concepts (a so-called teacher of chemistry), I 
find the experience of confronting the ethical issues of the 
new biotechnology to be a mixture of a little worry and much 
celebration. I celebrate both the awesome achievements of 
the human mind and the questioning engagement of the human 
spirit with their potential for good or ill. I see both the 
science and the concern as examples of the continuing creation 
of Homo sapiens sapiens , in God's image. Accordingly, I 
find it exciting to share in the dialogue between biologists 
and theologians, and I relish the prospect of helping lay 
study groups to engage in similar dialogues. 

Undoubtedly there will be within many study groups those 
Pharisaical viewers-with-alarm who will call for moral stances 
and resolutions against any and all genetic manipulation as 
a desecration of the temple. By now we should have learned 
from the history of human inquiry and human enterprise that 
such interdictions against exploration are futile as well as 
theologically questionable. God's children cannot even agree 
on the boundaries of the simplest commandment, Thou shalt not 
kill ; until we can, does it make any sense to proclaim You 
shall not modify genetic matter , or even You shall not tangibly 
profit from synthesis or new genetic material ? 

It does make a great deal of sense to debate these issues, 

whether or not the discussion seeks a consensus. For such 

debate engages both our minds and our spirits in the fundamental 

questions What is life?, What is human personhood?, What is 

health?, Can civil laws be based upon assumed answers to these 

294 



questions? An "informed electorate" very much needs to 
confront these questions, which are already being acted upon 
by our legislative bodies and courts. Our churches and 
temples should be encouraging and assisting those open-minded 
discussions needed to give their people the broadest and 
soundest possible foundation for their own convictions and 
votes . 



295 



by: John H. Snow 

For the last ten years I have been teaching Pastoral 
Theology in an Episcopal seminary. I was hired originally 
as a generalist; someone not too focused on any particular 
field who had some gift for synthesis which would be brought 
to teaching homiletics, parish ministry courses and the like. 
When one's job description is not too clearly defined, one 
looks around for a niche, for some neglected area which can 
be exploited to the benefit simultaneously of oneself and 
the whole system. For me this area became that of the 
relationship between theology and the way institutions go 
about their business. 

I had theorized that institutions are organized around 
certain basic assumptions about the nature of reality, and 
that these assumptions are communicated to people in and out 
of these institutions by how they go about their tasks. 

I was particularly interested in applying this theory 
to the parish, and in the process of doing so discovered that 
there was often a startling conflict between the Gospel preached 
from the pulpit and the practices of the parish as an institu- 
tion. In matters of fundraising, choosing of Wardens and Vestry, 
the selection of a minister, the choice of news for a news- 
letter. Even in the organization of a parish supper, a highly 
competitive process was the norm. In the parish, as in 
business or academia, the intelligently aggressive were 
rewarded while others were ignored. The survival (which was 
equated with the "smooth running") of the parish was always 

296 



the first consideration. Yet, ironically, the very competi- 
tive mode of organizing parish life often led to conflict 
and turbulence. 

The parishes to which I applied my theory were largely 
suburban and transient, made up for the most part of first 
or second generation college graduates, people removed only 
by one or two generations from the working class, trying to 
find out who they were in a new class constantly redefining 
itself through the media as it tried to assimilate one 
technological dislocation after another. 

As happens during times of generational discontinuity, 
the culture of these people had become thin and diffuse. 
History seemed to them a useless burden, irrelevant to their 
condition. Yet there seemed to be some deep consensus which 
loosely held together their corporate lives and out of which 
their values emerged. 

On the surface there seemed to be an obsession with the 
dynamics of win/lose, with pro football, quantified test results, 
getting into "the college of one's choice," with salary as a 
"bottom line" definition of an individual's significance. 
Winning, being a winner, became, as Vince Lombardi and 
President Nixon believed, not the most important thing. Winning 
became the only thing. All this was only a little less 
true of the average suburban parish than it was of the middle 
class culture in general. Those parishes which by their 
institutional structures z-einforced win/lose values briefly 
flourished, as the suburbs themselves flourished. 



297 



Slowly, I came to conclude that the diffusion of culture 
results in the dependence of people on biological, particularly 
evolutionary theory such as natural selection to define them- 
selves in their relationship to society. I concluded as well 
that such reductionist social theory leads to wide spread 
paranoia; that obsession with survival is a classical and 
Biblical definition of human sin, and that the primary task 
of the Church is to provide in its preaching, teaching and 
common life an alternative to "social Darwinism." 



298 



by: M. Jeanne Sproat 

As one theologically trained, working primarily in a 
support/advocacy relationship in Boston area medical centers, 
I offer the following observations: 

First, the Biotechnology Study Group simply in its 
conception, providing as it did time and space for serious 
and mutually enlightening conversation between theologians 
and scientists, has served a vital role. Professionally 
speaking, both groups have deep concerns about the origin 
of life, the quality of human existence and the well-being of 
future generations of all species in the created order. A 
recognition of the common concerns, while respecting great 
and important differences of approach and solution to problems, 
has provided a good model for continuing dialogue, and has 
begun to bridge the traditional gap between science and religion. 

Second, the study points out what we know to be true 
but find difficult to work with: namely, that the problems 
of technology in the present age are so large and the conse- 
quences so universally crucial, both the movement toward 
solutions and the bearing of burdens of responsibility and 
accountability must be shared. 

Third, increasingly, ordinary people must deal with the 
impact of the biotechnical revolution on their personal lives, 
and must be informed in such ways that they can make moral 
decisions about things which directly impinge upon them and 
their families. They may turn to professionals in their 



299 



religious congregations for guidance and support; those 
professionals must have a sound working knowledge not only of 
the data available, but of some of the consequences of any 
decision to be made. 

Fourth, whatever empirical knowledge may continue to be 
learned and disseminated, the existence of common ground for 
discussion and mutual respect for the commitment and good- 
will of scientists and theologians, however different, hopefully 
can lead to the practical realization that our control over 
our own lives or those of others is limited; that particularly 
in the critical times of human interaction the existence of 
the mysterious must be acknowledged and revered. 

Finally, the study in its completed form provides real 
education for life -- not a life that is basically composed 
of problems to be solved, or behaviors analyzed. Rather, that 
while problems, issues, and concerns do exist and must be 
resolved, how human beings rally their resources (both interior 
and exterior) to meet conflicts, and how they integrate their 
experiences in a healthy way are as important for scientists 
as for others. The human endeavor requires the best cooper- 
ation of all so that all can live life abundantly. 



300 



PROFESSIONALS CONFERENCE AND TEST SITES 
In a letter to several scientists, physicians, theo- 
logians and ethicists, the Bishop of the Episcopal Diocese 
of Massachusetts wrote: "A group from various disciplines 
has been meeting to shape a curriculum and to define the 
questions that a study guide needs to address .... It is 
essential that they consult with a broader group of people 
professionally involved with the issues and developments in 
this area. They need your critical appraisal of the questions 
they have raised and your best insights on the provisional 
design." Forty people responded to this invitation and 
attended a two-day conference held at the Episcopal Divinity 
School on December 3 and 4, 1982. The consultation was at 
an early but critical stage in the development of this 
curriculum. Our two days were intense, exciting, and the 
exchange was honest as individuals from diverse backgrounds 
worked hard to communicate with understanding as they asked 
essential questions about issues important to biotechnology 
and ethics. 

The participants in this consultation included: 

* The Rev. David A. Ames, M.Div. 
Barbara Braver, B.A. 
William Cashore, M.D. 

* The Rev. Charles A. Cesaretti, Ph.D. 
Faith Chase, B.S. 

The Rev. Don F. Colenback, Ph.D. 
Katherine Crecelius, Ph.D. 

301 



* Philip A. Drinker, M.D. 
Arthur Dyck, Ph.D. 
Clare W. Fearon, Ph.D. 
Douglas T. Fearon, M.D. 
Elsie R. Francis, B.A. 

* The Rev. Colin B. Gracey, S.T.B. 
Susan Gracey, Ed.M. 

Carol Greger, B.F.A. 

The Very Rev. Harvey H. Guthrie, Jr., Th.D 

Eleanor Hackett, B.A. 

The Rev. Frank M. Harron, Ed.M., M.Div. 

Kenneth Heckman, M.D. 

Peter Heywood, Ph.D. 

* Nancy Hopkins, Ph.D. 
Ruth Hubbard, Ph.D. 

* Sheldon Krimsky, Ph.D. 
John Ladd, Ph.D. 
Marcel LaFollette, Ph.D. 
Carol Landau, Ph.D. 

The Rev. William G. Leach, M.Div. 
Marilyn McGowan , R.N. 
J. Robert Nelson, Th.D. 

* The Rev. Scott I. Paradise, B.D. 

* The Rev. Edward W. Rodman, M.Div. 
Gladys Rodman, R.N. 

Tamah L. Sadick, Ph.D. 

* Stephen Scher, Ph.D. 

302 



Susan Setta, Ph.D. 

* Robert A. Shepard, Ph.D. 

The Rev. John E. Skinner, S.T.D. 

* The Rev. John H. Snow, M.A. , B.D. 
Mary Snow, M.Ed. 

Lisa Steiner, Ph.D. 

Annamaria Torriani-Gorini , Ph.D. 

* Indicates member of the Biotechnology Study Group. 

After this consultation, the editors reviewed the 
evaluations and criticisms, and incorporated many of the 
suggestions into the text. Another step in the process 
was to test the case studies in a parish setting. Christ 
Church, Cambridge, was quick to volunteer for this effort 
during November - December, 1982. About forty-five people 
participated in four weekly meetings to read the cases and 
discuss them using questions provided for this purpose. 
Then, in February and March, 1983, another thirty-five 
people from Christ Church, Andover, Massachusetts, signed 
up to give the entire curriculum a test run. 

The evaluations, comments and letters which were received 
as a result of these sessions were of immeasurable help as 
the final task of writing and rewriting was undertaken. All 
of the people who took part in these meetings have contributed 
to the shape of the final document. 



303 



GLOSSARY 
Acid rain - The oxides of sulfur and nitrogen within gases 
from power plants, factories and vehicles which react with 
water vapor in clouds and result in acidic precipitation. 
Adenosine deaminase deficiency (ADD) - The insufficiency of 
an enzyme that converts adenoine into inosine. 
AID , AIH - Artificial insemination by donor; ...by husband. 
AIDS - Acquired Immune Deficiency Syndrome. 
Amino acids - The building blocks of proteins. There are 
20 common amino acids; they are joined together in a strictly 
ordered "string" that determines the character of each protein. 
Amniocentesis - Needle puncture of the uterus and amniotic 
cavity through the abdominal wall to allow amniotic fluid 
to be withdrawn by syringe. The term is often applied to 
the whole procedure of prenatal diagnosis by culture and 
analysis of amniotic fluid cells. 

Anneal - The process by which the complementary base pairs 
in the strands of DNA combine. 

Antibody - A protein formed in the blood or tissues in response 
to some specific antigen and which reacts with or neutralizes 
that antigen. 

Antigen - Any protein substance such as toxins , bacterial 
cells, foreign blood or plasma which introduced into the 
body of a living organism stimulates the production of anti- 
bodies . 

Autosome - Any ordinary paired chromosome as distinguished 
from a sex chromosome; there are 22 pairs of autosomes in 

humans . 

304 



Bacteriophage (or phage) - A virus that multiples in bacteria. 
Bacteriophage lambda is commonly used as a vector in recombinant 
DNA experiments . 

Bet a- thalassemia - See Thalassemia. 

Biotechnology - The collection of industrial processes that 
involve the use of biological systems. For some of these 
industries, these processes involve the use of genetically 
engineered microorganisms. 

Birth defect - A disease, disorder, or other condition present 
at birth that can impair an individual's health. 
Blastocyst - An early stage in the development of an embryo. 
Cardiac arrest - A sudden cessation of heart function. 
Catheter - Atubular, flexible, surgical device for withdrawing 
fluids from a cavity of the body. 

Cell fusion - The fusing together of two or more cells to 
become a single cell. 

Cesarean section - Incision through the abdominal and uterine 
walls for delivery of a fetus. 

Chromosomes - The threadlike components of a cell nucleus 
that are composed of DNA and protein. They contain most of 
the cell's DNA. 

Classical genetics - The body of knowledge that deals with 
the laws of inheritance of genes such as determined by appro- 
priate test matings. (Compare molecular genetics.) 
Clone - A group of genetically identical cells or organisms 
asexually descended from a common ancestor. All cells in the 
clone have the same genetic material and are exact copies of 
the original. 

305 



Congenital - Conditions that are present at birth regardless 

of their cause. 

Conjugation - The one-way transfer of DNA between bacteria 

in cellular contact. 

Convulsions - A violent involuntary contraction or series of 

contractions of the voluntary muscles. 

Crossing-over - A normal genetic event that always occurs 

during the reduction division of germ cell formation, which 

involves the breakage and reunion of DNA molecules. 

Cut - A break that occurs in both strands of a DNA molecule 

opposite one another. 

Cytoplasm - The protoplasm of a cell, external to the cell's 

nuclear membrane. 

PES - Diethylstilbestrol. 

Dioxin - Dimethoxane; a toxic chlorinated hydrocarbon. 

Diploid - A cell with the usual number of chromosomes, in 

contrast to haploid. 

DNA (deoxyribonucleic acid) - The genetic material found in 

all living organisms. Every inherited characteristic has 

its origin somewhere in the code of each individual's complement 

of DNA. 

DNA vector - A vehicle for transferring DNA from one cell to 

another. 

Embryo - The early developmental stage of an organism produced 

from a fertilized egg. 

Endonuclease - An enzyme that nicks or cuts DNA molecules ; 

unlike a exonuclease, it does not require a free end to act. 

(See also restriction enzyme.) 

306 



Enzyme - A functional protein that catalyzes a chemical 

reaction. Enzymes control the rate of metabolic processes 

in an organism. 

Escherichia coli (E. coli) - A bacterium that commonly inhabits 

the human intestine. It is an organism used in many 

microbiological experiments. 

Eukaryote - A higher, compartmentalized cell characterised 

by its extensive internal structure and the presence of a 

nucleus containing DNA. All multicellular organisms are 

eukaryotic. The simpler cells , the prokaryotes , have much 

less compartmentalization and internal structure; bacteria 

are prokaryotes. 

Exonuclease - An enzyme that removes bases sequentially from 

the ends of a linear DNA molecule. 

Fermentation - The biochemical process of converting a raw 

material such as glucose into a product such as ethanol. 

Fetoscopy - A technique for visual observation of the fetus 

in the uterus. 

Fetus - The unborn offspring in the post-embryonic period, 

after major structures have been outlined; in humans from 

seven or eight weeks after fertilization until birth. 

Follicles - See Ovarian follicles. 

Galactosemia - A hereditary disease involving a defect in 

metabolism of galactose which is a nutrient of milk. Symptoms 

if untreated: mental retardation, lesions of various organs 

and cataracts . 

Gamete - A mature reproductive cell. 

307 



Gene - The hereditary unit, such as a segment of DNA coding 

for a specific protein. 

Gene expression - The manifestation of the genetic material 

of an organism as specific traits. 

Gene mapping - Determining the relative locations of different 

genes on a given chromosome. 

Genetic - Pertaining to reproduction, or to birth or origin. 

Genetic code - The biochemical basis of heredity consisting 

of condons (base triplets along the DNA sequence) that determine 

the specific amino acid sequence in proteins and that are the 

same for all forms of life studied so far. 

Genetic drift - Changes or gene frequency in small populations 

due to chance preservation or extinction of particular genes. 

Geneticist - Aspecialist in the study of heredity. 

Germ cell - The sex cell (sperm or egg) . It differs from 

other cells in that it contains only half the usual number 

of chromosomes. Male and female germ cells fuse during 

fertilization. 

Germ plasm - The total genetic variability available to an 

organism, represented by the pool of germ cells or seed. 

Guardian ad litem - A person appointed by law to represent 

the interests of someone for a particular action or proceeding. 

Haploid - A cell .with half of the usual number of chromosomes. 

Hemophilia - A hereditary condition causing hemorrhages and 

uncontrollable bleeding following injury. It affects males, 

being transmitted as an X-linked recessive trait. 

308 



Histidinemia -A hereditary defect of metabolism characterized 
by excessive amounts of histidine in the blood and urine. 
Symptoms : modest mental retardation and disordered speech 
development. Pattern of transmission: autosomal recessive. 
Homocystinuria - An inborn error of sulfur amino acid metabolism 
due to absence or deficiency of a liver enzyme. Symptoms: 
mental retardation, heart and skeletal disorders. 
Hormones - The "messenger" molecules of the body that help 
coordinate the actions of various tissues; they produce a 
specific effect on the activity of cells remote from their 
point of origin. 

Huntington ' s disease - Symptoms: between the ages of thirty 
and forty, progressive deterioration of the brain and central 
nervous system, producing involuntary jerking, loss of mental 
abilitites, depression, insanity, and ultimately death. 
Treatment: none. Pattern of transmission: dominant. 
Hybridoma - A rapidly proliferating cell made by fusing a 
myeloma cell with another cell. (Myeloma is a cancer of 
plasma cells . ) 

Hydrocephalus - A condition characterized by abnormal accumula- 
tion of fluid directed into tissues in the head accompanied 
by enlargement of the head, atrophy of the brain, mental 
deterioration and convulsions. 

Hypothyroidism - A deficiency of thyroid activity. In infants 
a congenital lack of thyroid secretion leads to arrested 
physical and mental development, dystrophy of the bones and 
soft parts, and lowered basal metabolism. 

309 



In vitrc - Outside the living organism and in an artificial 

environment . 

In vivo - Within the living organism. 

IRS - Institutional review board. 

Laminar flew room - An air flow (LAF) isolation room. 

Laparotomy - A surgical incision through the abdomen. 

Maple sugar urine disease - A disease of metabolism. Symptoms: 

Postnatal collapse; mental retardation in survivors. Treatment: 

diet therapy. Pattern of transmission: autosomal recessive. 

Meninges - The three membranes that envelop the brain and 

spinal cord. 

Meningi tis - Inflamation of the meninges. 

Meningo m yelocele - A hernial protrusion of a part of the 

meninges and substance of the spinal cord through a defect 

in the vertebral column. 

Messenger RNA - Ribonucleic acid molecules that transmit the 

genetic information from the nucleus to the cytoplasm, where 

they guide protein synthesis. 

Metabolism - All the physical and chemical processes by which 

living organized substance is produced and maintained, and 

also the transformation by which energy is made available 

for uses of the organism. 

Microcephaly - Abnormal smallness of the head, usually 

asrociated with mental retardation. 

Molecular genetics - Deals with the study of the nature and 

biochemistry of the genetic material. Includes the technolog 

of genetic engineering that involve the directed manipulation 

of the genetic material itself. 

310 



Monoclonal antibodies - Antibodies derived from a single source 

or clone of cells that recognize only one kind of antigen. 

Mutation - Any change that alters the sequence of bases along 

the DNA, changing the genetic material. 

Neurosurgeon - A physician who specializes in surgery of the 

nervous system. 

Nick - A break in one strand of a DNA molecule in which no 

bases are removed. 

Nucleic acid - A polymer composed of DNA or RNA subunits . 

Nucleotides - The fundamental units of nucleic acid. They 

consist of one of the four bases- adenine, guanine, cytosine 

and thymine (uracil in the case of RNA)- and its attached 

sugar-phosphate group. 

Obstetrician - One who deals with the management of pregnancy, 

labor and birth. 

Ovarian follicles - The egg and its encasing cells at any 

stage of its development. 

Phage - See bacteriophage. 

Phenylketonuria (PKU) - Symptoms: an inborn error of 

metabolism, PKU is the inability to metabolize the amino 
acid phenylalanine. In the newborn, PKU can be detected 
through a simple blood test. Later on, a child with PKU can 
be identified by unusually lighter hair or skin than his 
or her siblings. In advanced stages, PKU can produce 
abnormal destructive behavior and degrees of mental retarda- 
tion. Treatment: The most serious effects of PKU can be 

prevented in infancy through a special diet that balances 

311 






the body's lack of phenylalanine enzyme. If PKU advances 
beyond this stage, institutionalization may be required to 
deal with severe mental and physical retardation. Pattern 
of transmission: recessive. 

Plasmid - Hereditary material that is not part of a chromosome. 
Plasmids are circular and self replicating. Because they are 
generally small and relatively simple, they are used in 
recombinant DNA experiments as acceptors of foreign DNA. 
Polymorphism - A gene or unexpressed DNA variant that occurs in 
a population with a grequency too great to be explained by 
mutation. 

Protein - A linear polymer of amino acids; proteins are the 

products of gene expression and are the functional and structural 

components of cells. 

Recombinant DNA - The hybrid DNA produced by joining pieces 

of DNA from different sources. 

Restriction enzyme - An enzyme within a bacterium that 

recognizes and degrades DNA from foreign organisms, thereby 

preserving the genetic integrity of the bacterium. In 

recombinant DNA experiments, restriction enzymes are used as 

tiny biological "scissors" to slice foreign DNA before it is 

recombined with a vector. These enzymes are also called 

restriction endonucleases . 

RNA (ribonucleic acid) - In its three forms- messenger RNA, 

transfer RNA, and ribosomal RNA- it assists in translating 

the genetic message of DNA into the finished protein. 

312 



Sickle cell disease - Symptoms: a blood test will reveal that 
the bearer of this disease has blood cells that are sickle- 
shaped, rather than the normal round shape. Although victims 
of this disease can lead normal lives, severe anemia is common, 
and affected individuals experience periodic pain and infec- 
tions. The life span is shorter than normal. Treatment: no 
cure has been found. Temporary analgesic relief, antibiotics, 
and occasional blood transfusions are necessary. Pattern of 
transmission: recessive. 

Somatic cell - One of the cells composing parts of the body 
(e.g., tissues, organs) other than a germ cell. 
Sonography - Ultrasonography. The visualization of deep 
structures of the body by recording the reflection of ultra- 
sonic waves 

Spastic paraplegia - Paralysis marked by spasms of the muscles 
of the paralysed part. 

Spina bifida - A developmental anomaly characterized by 
defective closure of the bony encasement of the spinal cord, 
through which the cord and meninges may or may not protrude. 
Tay - Sachs disease - Symptoms : an infant with Tay-Sachs disease 
appears normal at birth. Within four to eight months, the first 
symptoms appear in the form of weakness, sluggishness, and poor 
psychomotor development. The symptoms become progressively more 
severe- blindness, deafness, seizures, paralysis and total mental 
retardation usually occur. Death always occurs by three to five 
years of age. Treatment: none. Pattern of transmission: recessive 
Thalassemia (Cooley's anemia) - Symptoms: severe anemia, 

313 



the result of a failure of the body to produce blood cells 
with the normal amount of hemoglobin. Children with thalassemia 
are pale and listless. Treatment: hemoglobin transfusions through- 
out life, beginning in the first year. Pattern of transmission: 
recessive. 

Totipotency - Capability of a cell, prior to differentiation, 
to express all of its genetic material. 

Transduction - The process by which foreign DNA becomes 
incorporated into the genetic complement of the host cell. 
Transformation - The transfer of genetic informaiton by DNA 
separated from the cell. 

Ultrasound - Mechanical radiant energy with a frequency greater 
than 20,000 cycles per second. 

Vector - A transmission agent; a DNA vector is a self-replicating 
DNA molecule that transfers a piece of DNA from one host to 
another. 

Virus - An infectious agent that requires a host cell in order 
for it to replicate. It is composed of either RNA or DNA 
wrapped in a protein coat. 

Zygote - A fertilized egg. 

********************* 

Sources for this material include Splicing Life , a Report of the 
President's Commission for the Study of Ethical Problems in 
Medicine and Biomedical Research; Coping with Genetic Disorders 
by John C. Fletcher, published by Harper & Row, as adapted from 
pp. 72-78 of Genetic Conditions (1977) , published by the California 
State Department of Education, and used with permission; and 
Dorland 1 s Illustrated Medical Dictionary , Twenty-fifth Edition. 

314 



BIBLIOGRAPHY 

This is a selected list which the editors suggest for 
those who desire further reading. 

Abrecht , Paul, ed. Faith, Science and the Future , Fortress 

Press, Philadelphia, 1978 
Barbour, Ian G., Issues in Science and Religion , Prentice 

Hall, Inc., Englewood Cliffs, N.J., 1966 
Birch, Charles and Cobb, John B., Jr., The Liberation of 

Life, Cambridge University Press, Cambridge, 1981 
Chorover , Stephan L., From Genesis to Genocide , The HIT 

Press, Cambridge, MA., 1980 
Dyson, Freeman, Disturbing the Universe , Harper & Row, 

New York, 1979 
Fletcher, John C. , Coping With Genetic Disorders , Harper 

& Row, San Francisco, 1982 
Fletcher, Joseph, The Ethics of Genetic Control : Ending 

Reproductive Roulette , Anchor Books, Garden City, 

N.Y. , 1974 
Fletcher, Joseph, Humanhood : Essays in Biomedical Ethics , 

Prometheus Books, Buffalo, N.Y. , 1979 
Gilligan, Carol, In A Different Voice , Harvard University 

Press, Camoridge , MA., 1982 
Gregorios, Paulos , The Human Presence : An Orthodox View of 

Nature, World Council of Churches, Geneva, 1978 



315 



Harron , Frank, Burnside, John, H.D., and Beauchamp , Tom, 

Health and Human Values: A Guide to Making Your Own 

Decisions , Yale University Press, New Haven, 1983 
Harsanyi, Dr. Zsolt and Hutton, Richard, Genetic Prophecy : 

Beyond the Double Helix , Bantam Books, Toronto, New 

York, 1981 
Krimsky, Sheldon, Genetic Alchemy , The MIT Press, Cambridge, 

MA. , 1982 
Marty, Martin E., and Vaux, Kenneth L. , Health/Medicine 

and the Faith Traditions , Fortress Press, Philadelphia, 

1982 
Nelson, J. Robert, Science and Our Troubled Conscience , 

Fortress Press, Philadelphia, 1980 
Peacocke, A.R.., Creation and the World of Science , Clarendon 

Press, Oxford, 1979 
Pollard, William G. , Physicist and Christian: A Dialogue 

Between the Communities , The Seabury Press, Greenwich, 

Ct. , 1961 
Rose, Steven, ed . , Against Biological Determinism , Allison 

& Busby, London: New York, 1982 
R.ose, Steven, ed., Towards A Liberation Biology , Allison 

& Busby, London: New York, 1982 
Schilling, Harold K. , Science and Religion: An Interpretation 

of Two Communities , Charles Scribner's Sons, New York, 

1962 



316 



Shannon, Thomas A. , ed. , Bioethics: basic writings on the 

key ethical questions that surround the major, modern 

biological possibilities and problems , Revised, 

Paulist Press, Ramsey, N.J. 1981 
Shinn, Roger L. and Abrecht, Paul, eds., Faith And Science 

In An Unjust World , Vols. 1 & 2, Fortress Press, 

Philadelphia, 1980 
Vaux, Kenneth, Biomedical Ethics , Harper & Row, New York, 

1974 
Watson, James D. , The Double Helix , Mentor, New American 

Library, New York, 1968 
Wojcik, Jan., Muted Consent , Purdue University Press, West 

Lafayette, Indiana, 1978 

Reports 

"Human Life and the New Genetics" A Report of a Task Force 
Commissioned by the National Council of the Churches 
of Christ in the U.S.A., January, 1980 

"Making Health Care Decisions" Volume One: Report, 

President's Commision for the Study of the Ethical 
Problems in Medicine and Biomedical and Behavioral 
Research, October, 1982 U.S. Government Printing Office, 
Washington, D.C. 20402 

"Splicing Life" A Report on the Social and Ethical Issues of 
Genetic Engineering with Human Beings, November, 1982 
U.S. Government Printing Office, Washington, D.C. 20402 



317 



Periodicals 

Anglican Theological Review , Vol. LXIII, No. 4, October, 1981 
The Hastings Center Report , a bimonthly publication of The 
Institute of Society Ethics and the Life Sciences, 
3G0 Broadway, llastings-on-Hudson, N.Y. 10706 




318 



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